Action learning and reflection with HIV/AIDS home-based care workers in Gauteng

8th Annual Qualitative/Critical Methods Conference - Critical Methods Society

Something for nothing

	Paper presented at the 8th Annual Qualitative Methods Conference: "Something for nothing" 1 May to 30 September 2002 (http://criticalmethods.org/p105.mv)
	Voluntary HIV/AIDS home-based care work traps = A predatory health care system? Annalie G. Pistorius Contact e-mail: [email protected] Affiliation: Department of Psychology, Medical University of Southern Africa
	Last year, I had engaged voluntary home-based care workers and HIV/AIDS peer counsellors in small group discussions, using action learning and encouraging each to keep a personal journal on their care work experiences. The need for the "debriefing of traumatised" home-based care workers was identified by a peer support training organisation together with a managing governmental official, HIV/AIDS counsellors, home-based care workers and their community organisations in Tshwane, South Africa. When the government official requested me to do "debriefing sessions" with the home-based care workers, and offered payment thereof, I was impressed about their serious attending to the care worker�s personal and community development challenges. At commencement of the sessions, I was also moved with the great number of volunteers, many but not all of them HIV-positive, mostly women, many mobilised by members of the health department and community groups in support of people living with HIV/AIDS and dying at home. I thought: "something positive is happening - community organisations are being sponsored to train community volunteers in peer counselling and home-based care". The voluntary workers opened up very easily and offered many personal stories about their home-based care experiences that made them feel traumatised and powerless. I was hoping to assume a developmental orientation, promoting more than mere crisis intervention. I managed to give the counsellors and care workers an opportunity to reflect on and share experiences related to an appreciation of their services, eg what motivated them to do this kind of work, their personal tendencies and how they dealt creatively with problems. They also voiced common dilemmas pertinent to policy-making and funding. Common themes included: being in the front line and having to deal with all the needs of the patient/client; the lack of multi-sectoral and inter-departmental co-operation; voluntarism requires incentives and material support; and, care givers are not always given the recognition they deserve, yet they are being co-opted for the selfish needs of the health sector. We also explored a model for care worker self-development, which entailed balancing power and control issues with facilitating information flow and creativity. My sessions were however stopped halfway through by the manager of the organisation that had arranged them. He informed me: "government decided to stop funding of small organisations". I responded by calling all participants together into a final session, pulling together their common themes and frustrations into a collective feedback report to the AIDS directorate of government. I thought that a shift to facilitating information flow would render a response, only to find that our government contact persons claimed that they had not received our report. Moreover, I was informed that it was the said organising NGO who's sponsorship was stopped, that government never requested "debriefing sessions", that we should not consult "the wrong officials", etc. I could not help feeling somewhat mislead and paranoid. What happened seemed to me a repetition of my story that I tended to be eager to help others, only to be abused by individuals or the system. The virtual conference page on "Something for Nothing" also encourage me now to wonder about the costs and gains of voluntary work for each participant involved - the client of the home-based care worker, the volunteer, the NGO management, government, professionals � Are we building a "predatory (health care) culture" of "stalkers and victims"? (McLaren, 1995). What kind of traps do we set?
	Introduction In this paper I present the experience I had with the debriefing of voluntary home-based care workers and HIV/AIDS peer counsellors in and around Tshwane (Pretoria) during 2001. I reflect on what proceeded when the sessions were stopped by the managing organisation when their governmental funding ended. I include extracts from the diary entries and inputs that the care workers had offered me concerning their experiences of home-based care, which we provided in a feedback report to the Gauteng HIV/AIDS Directorate of the Department of Health. I theorise on how different players (like me) might tend to be eager to help others while being uncritical of how our support of a new approach may make matters worse. I also include the responses I gained from others and during the Critical Methods Conference, searching for ways on how to turn the problem around. I finally offer some ideas on how participants of the home-based care approach could take care of themselves and care workers. Debriefing voluntary home-based care workers Last year, I had engaged voluntary home-based care workers and HIV/AIDS peer counsellors in small group discussions, using action learning and encouraging each to keep a personal journal on their care work experiences. The need for the "debriefing of traumatised" home-based care workers was identified by a peer support training organisation together with a managing governmental official, HIV/AIDS counsellors, home-based care workers and their community organisations in Tshwane, South Africa. When the government official requested me to do "debriefing sessions" with the home-based care workers, and offered payment thereof, I was impressed about their serious attending to the care worker�s personal and community development challenges. At commencement of the sessions, I was also moved with the great number of volunteers, many but not all of them HIV-positive, mostly women, many mobilised by members of the health department and community groups in support of people living with HIV/AIDS and dying at home. I thought: "something positive is happening - community organisations are being sponsored to train community volunteers in peer counselling and home-based care". The request for the "debriefing sessions" and offers of payment thereof also indicated their serious attending to the care worker�s personal and community development challenges. The training organisation (whom I will refer to as the Training Network, T-Net) served 18 CBOs in and around Thswane in Gauteng (including Hammanskraal and Cullinan). (T-Net is a pseudonym. I have used pseudonyms whenever the identities of individuals or organisations are at stake). The care workers and their organisations were based in poor and low to middle class communities in the townships and informal settlements around Pretoria. As these organisations were mostly small and developing and no fees were charged by T-Net for its services. Instead, the Gauteng HIV/AIDS Directorate provided T-Net funding to sponsor a manager�s salary, and the training sessions on home-based care, peer counselling and mentoring. The organisation impressed me with their networking approach to achieving their objectives. It had one manager (and a committee) who contracted independent professionals to carry out their training tasks. I understood that debriefing in the context of home based care and HIV/AIDS counselling entailed the aim to provide counsellors and care workers an opportunity to talk about their frustrations and traumatic experiences, ventilate emotions, and to consolidate these into an appreciative understanding. I also wanted to introduce a further aim, which was to prepare each care worker to reflect on his or her helping practices, to share their reflections with others and through collaborative reflection to generate some ideas on how to deal creatively with their problems and resources. I was hoping to engage my participants in a process of self-reflection and experiential learning, assuming a developmental orientation. The manager of T-Net and I started off with a meeting which all the care workers from the different client organisations attended, to discuss the need that was expressed for debriefing as well as the practicalities thereof. During this meeting, the care workers impressed me with their noble intentions and enthusiasm about home-based care work. I was impressed with their dedication to serve patients at home in return for nothing at all. Many of them expressed how their voluntary community work had given them a sense of meaning and purpose, because they were unemployed and feeling useless. Some of them just recently learned that they are HIV-positive. On exploring the need for debriefing, I found only a few care workers who felt traumatised by the way someone died. Most of the care workers� need for debriefing, centred on feelings of powerlessness and a lack of care worker support. "The policy of Department of Health is that we care and support the people at home as hospitals are full with few available beds. Many home care workers were mobilised by nurses and work hand-in-hand with them to help take care of patients at home and distribute their tablets. Hospitals are full and we have to care and support people at home. We are committed to do our work in the community voluntarily and the people we serve have no food. However, when we visit the homes of our patients, we are faced with no travelling allowance and no material support to assist our duties or the needs of our patients, such as dealing with the lack of ambulance services. Further, clinics and hospitals have become short staffed and many nurses have left the country. Care givers are thus expected to do more - filling in for the nurse." We all agreed that there was an urgent need for the debriefing sessions. I introduced them to action learning and collaborative action research. I requested them to each keep a personal diary in which they would describe problematic events and reflect on how they managed them. They were to share their notes in small group context and talk about their problem solving ideas. Where possible, each group would comprise of members from different organisations. The idea was that care workers would have the opportunity to exchange ideas with care workers elsewhere. Hopefully, from such a broader sharing of ideas new insights would also be generated. Subsequent to the first meeting, four groups of approximately 8 care workers per group engaged bi-monthly in debriefing sessions. The idea was that another round of four groups would follow thereafter, and so on for others. Participants were encouraged to keep personal diaries in their vernacular and translations were done during group sessions. During group discussions I aimed at attending to their personal style and organisational resources that related to their problem solving. The care workers were also encouraged to identify common themes and share creative ideas on ways to manage problems. The care workers� responses to my requests were surprisingly positive. Most of them impressed me with how dedicated they were at keeping their diaries and case notes. Keeping a diary made sense to them. As one care worker had put it: "Keeping a diary works well for problems solving, because you have to pause a bit and reflect on what you do from a distance. This gives you a chance to think critically about what you are going to do next, and not just going ahead and becoming overwhelmed by what happens". The care workers also seemed to enjoy opening up and comparing their experiences with care workers from other communities. The manager of T-Net had planned four sessions for the first four groups over a period of two months. However, the sessions were stopped halfway through, after they had engaged in two or three sessions, because T-Net�s governmental funding was stopped. The T-Net manager informed me: "government decided to stop funding small organisations". The funding policy of government had apparently shifted to the channelling of grants to organisations that have the capacity to manage large amounts of funds. This raised concern for the livelihood of small and developing organisations and the effectiveness of channelling their funding under the auspices of bigger organisations and consortia. Another concern was that a once-off seed fund for small, and developing Non-Profit Organisations (NPOs) were problematic for their survival. Social policymaking that showed concern for HIV/AIDS community workers and their developing organisations seemed critical. I responded by calling all participants together in a final session. Through group work, we identified common themes and stories from their diaries, my notes from sessions and our group discussion. Hence, participants and I pulled together their common themes and frustrations into a collective feedback report to the Gauteng AIDS Directorate of the Department of Health. The specific aims of this report were to: "(a) give voice to the problems that HIV/AIDS community workers and their organisations experience in the course of their community services; (b) promote an appreciation of the valuable social capital that South Africa enjoys in the field of HIV/AIDS community-based health and welfare services, by community workers in co-operation with government; and (c) give information that was pertinent to policy making and funding arrangements of government". We also requested a response from the HIV/AIDS Directorate on our report, and about policy and funding plans concerning HIV/AIDS workers and their organisations. What follows are extracts from our report, including my notes and diary inputs from the care workers. The report dealt with the home-based care workers� resources, motivation, experiences and problems, and common themes pertinent to voluntary care worker policy and funding. The care workers and their managing committees gave their permission that their inputs are included in reports to government, professionals and the public. *Organisational Resources and Social Capital* "EACH in Eersterust was started 10 years ago by clinic sisters and community members. We did a research and identified cancer and psychiatric patients as in need. We started support groups with the clients and families. Spare rooms at the clinic were given to the organisation cost free. Our activities were done with the assistance of the sister in charge at the clinic, nurses and the occupational therapist from the University of Pretoria. We have twelve volunteers. We have different support groups from Monday to Thursday for patients with stroke, disabilities, arthritis, cancer, HIV/AIDS and psychiatry. In the afternoon after each group, the sister goes out with the volunteers to visit the sick. We started home-based care funded by the Department of Health in 2000. We have five home caregivers who were trained. They serve patients with stroke, TB, cancer, diabetes, mental health and AIDS. When their patients die, they prepare the family and assist them through the process. We are in the process of erecting a Hospice Respite Centre, co-funded by the Japanese Embassy. We do fund rising three times a year for different projects". "Kopano ke Maatla (Atteridgeville) was started in 1999. We are 35 caregivers. We do home based care for patients with stroke HIV/AIDS and are Dots supporters for TB patients. We see 3 to 5 patients each per week, and do visits three to four times per week. We support 6-10 TB patients per day. We do it because we have something to do, can share with them and care for them". "The Institute for Primary Health (Soshanguve) was established in 1994. The organisation is registered under section 21 and the NPO Welfare act. They have four full time staff, 10 full time volunteers who receive R 500 per month incentive from the Department of Health. There is a further 20 volunteer support group. The organisation also has a management committee and a board of directors. Activities include home based care, school talks, counselling, radio talk shows, church outreach and a youth programme". "Thembelisha (Mamelodi) has 20 caregivers. Church members of the Apostic Faith Mission started this project in February 2000. Their aim is to help people who are terminally ill and who are living alone and dying with no one to look after. As a church organisation a lot of people bring problems at church and we realised that there is a need to help the community, which is suffering from HIV/AIDS and related diseases. Initially, we did not have anything, e.g. medicine, gloves and money for transport to go door-to-door visiting our patients. The church now gives us Sunday offerings to help for transport. We are operating in Stanza Bopape and around Nellmapius. We are being helped by our local clinics in Stanza I and II. It is our spirituality that makes us keep on going - we do it for the love and moral support we can give others". Volunteer workers do not have full time employment and are often not employed at all. Some of them sell fat cakes, do food gardens, work at cash loans, make beads, depend on their husbands or parents, do piece jobs or knit jerseys. Many volunteers were recruited by retired sisters or sisters at clinics from the Department of Health. Some initiated their organisations from their churches, and belong to burial societies or church groups. "Thusong Health Project in Pretoria offers services to sex workers. Some sex workers want to change their job. We are now working on establishing a job creation project for them, starting with dressmaking". *Having to cater for all needs of the patient and family* �The problem is that your patients become fully dependent on you. On your visit you find that they do not have food, and they can�t take the medication you bring them without food. Even when their condition is such that they need to see a doctor, their family has no money for transport. They live in conditions where there is no piped water, and you have to carry many buckets of water into their room so that you can wash them. You also leave sufficient buckets of water in their room so that a family member can wash them for the two days that you will not be visiting. On the third day you however find that no-one washed the patient." "Although you have explained to your patient and the family about how home based care work, they are waiting for you as their saviour. You wonder now, how should you influence the family?" "Most of us have five patients whom we visit three times during the week. The family however calls us over weekends to attend to a crisis and to do the patients� dressing". "One of my patients once asked me for money to buy some fruit on his way to the hospital but I refused. Thereafter I felt so guilty that I bought a bag of oranges and sent it after him to hospital". "It is difficult to decide when to give and when not and dealing with your guilt. There is this bible story about the women who refused to help this stranger who asked for help, because she was waiting for Jesus to come to her door. But thereafter she found that the stranger whom she rejected was Jesus". "There was this one patient of ours who lay dead in her bed for three days, her baby still sucking and the husband was just sitting there drinking. This made me feel disturbed". "Another patient�s bedsores were that septic that the room had a smell. When I went to see my doctor, I cried and wanted him to wash the smell from my face". "The husband says �you stole my wife� when you refer her to a hospice. The husband is not dealing with the illness." "Our patients are the poorest of the poor, they give use many complaints and always wants something to eat. With no support from elsewhere, it now looks like it is your burden. The Health Department should support home caregivers and not leave them empty-handed. They should give us food parcels to hand out". "Hospitals dump dying patients on you and the care giver is being accused when the patient is worse. Caregivers get burnout and frustrations because families are not helpful and start to blame care givers if something happen to their sick person. They load all their problems on the caregiver especially after the death of the patient". "At times when I find my patient being angry and the family is also angry with him, I feel trapped between them not knowing what to do - how do I create a peaceful environment, how do I deal with powerlessness and anger?" "The patients that are referred to us are critical. Often their families abandon them and the hospital does not treat them - they are now dependant on the home care giver." "We have problems that we don�t know how to solve, like transport for patients and money for it. We go from pillar to post to get someone to offer a car, an ambulance and a donation to pay for the petrol. We are too few - we cannot reach everyone. If policy makers could see how organisations are struggling, do a research of organisations. People down here, their organisations have nothing. People up there should see and touch links down here. We should get a push, moral support. It is dark down here - someone should give light. We need support, even our youth". *The disabled* "Many of the families that we care for have problems with disabled members at home. For example, this one granny is taking care of her daughter�s child who is mentally disabled. She cannot send him to special school because she says she has no money for school fees. She says the Social welfare cannot help her, and she cannot remember with whom she talked. When I asked her out about her problem to get the child�s disability fund, it came out that the child does not have a birth certificate, and the mother in Johannesburg does not cooperate, and the social worker here does not do home visits." "There are no wheel chairs for people with stroke". *Dealing with denial* "People move around, especially after they had tested HIV positive. They cannot face their families and their friends reject them". "There is this one youth that just sits with his head in his hands. When I try and talk to him he chases me away". "My one client is HIV positive, but she does not tell her husband". "This year I buried four girls from one boyfriend. It is difficult to deal with denial, one way that works is to just keep on giving information and to make sure that people know where to get help and support". *Recognition and support from nurses, doctors and social workers - some successes and some let downs* "We as care givers, are committed to do our work in the community voluntarily and the people we serve have no food. The policy of DOH is that we care and support the people at home as hospitals are full with few available beds. However, when we visit the homes of our patients, we are faced with no travelling allowance and no material support to assist our duties or the needs of our patients". "Nurses ignore us when we want to assist them. Some even use abusive language that makes us angry. We even feel like giving up because we are not getting any incentives for doing the work we are doing voluntarily". "Some doctors are supportive and even treat our patients for free as long as the caregiver is present". "Social workers are problematic - they always have an excuse that they have no transport to visit patients. So the caregivers are pressurised to do something for the patients and have to pressurise social workers to do something". "Our caregivers always ask about vacant houses that could be used for home care or hospice. With their efforts we will in future run our own hospice in Soshanguve. Already, Legae Clinic donated 20 beds and a 13-roomed house has been given to us. We are just waiting for the finalisation of papers". "Our caregivers care for all patients with all their sicknesses at home. They thus underwent a three-day DOTS workshop at Tlamelong Clinic. 20 caregivers in 2 groups attended the workshop. No transport funds were provided. They were however grateful of the training opportunity provided to them". "We believe that networking and partnership with all stakeholders are important. So caregivers are taking initiative to introduce themselves so as to get moral support and donations, to be able to help those in need." "Another problem with social workers is that they are absent in new settlement areas - they quit to work in the city". "A big problem is that in some of our areas the social workers and clinic sisters do not recognise our counsellors, even though they received training through T-Net. The Department of Health should introduce them to the clinics". *Hospices, orphanages and child headed families* "There are few hospices and many orphans are left to fend for themselves and turn to the street". "One AIDS patient died and lefts four kids, who were taken to their uncle. The second-born did not get along with him and stayed at the shack. She got raped, but runs away when I approach her". "Some children are left alone, no one to support them with food and everything they want. Children no longer go to school. Some orphans do not have birth certificates and if we want to help them to get some grants this becomes a problem. There is also a problem for those who are from 7 years and up - they are not allowed to get any grant". *Voluntarism and incentives* "Some of us get incentives such as a transport allowance, R 500 for voluntary work and a diploma in Home Based Care and peer counselling." *Co-optation of People Living With AIDS who serve as care givers and HIV/AIDS counsellors* "We, as the Success Support Group don�t have the resources to take care of our family and taking care of our People With AIDS (PWAs). Our group does counselling and awareness raising, home and hospital visits and exhibitions. And the most important thing is SUPPORT - PWAs need moral support. As the Success Support Group, we have a big big problem about people wanting to make money through us PWAs. For instance, an individual started a project for PWAs through F-Company, S and Child Welfare. While he was looking forward to satisfy his needs and to use PWAs, we gained nothing even though we were bribed by his offer to give our children money for school and pre-school. Many people advised us that we must be careful of him and that he was no longer working at S but still used the name of F-Company. Another example is M-Hospice who gets food donations from W for PWAs while PWAs get nothing. The Success Group is trained to do counselling but while M-Training do accommodate us with office space, they do not provide for the use of other facilities such as telephone and fax. Worst of all, they ignore us and invite people from outside to do counselling. The other problem is when there is an AIDS awareness event, we volunteer to help them but at the end of the day we are nothing because they don�t even give mention of our names or recognise our group. M-H gain funding from our AIDS status - this, they do by expecting us to disclose our status at short notice to visitors for R 50, we however feel depressed and used thereafter." *Common themes pertinent to voluntary care work policy and funding* The care workers and I highlighted the following themes from their diaries and our collective discussion: Caregivers cater for all needs of the patient and family - social welfare, economic, physical and psychological health Their services are dependent on good linking and co-operation with doctors, sisters, nurses, social workers, psychologists and their organisations Voluntarism requires incentives and material support Care givers do an excellent job in taking care of their patients and providing information to family members to assist them to deal with diseases Hospices and orphanages are lacking and are being developed through government-community organisation The disabled and resources for them require urgent attention Care givers, the role of the community and their organisational structures (eg church groups), are not always given the recognition they deserve, and are often abused and co-opted for the selfish needs of the health professional and the NGO sector Developing organisations, often lacking in resources and ability to secure funding, are not necessarily unskilled or ineffective in the services that they offer to the public. My subsequent progress I thought that an approach of information exchange would facilitate a response from government, only to find that our government contact persons claimed that they had not received our report. Subsequently, the manager of T-Net arranged a meeting with a managing departmental official, and invited some care workers and me to attend. At this meeting I was surprised to learn that it was T-Net�s sponsorship that was stopped, and not all small organisations as I were made to (or had chosen) to believe. The government official, with whom we had a meeting, also informed us that the department never requested "debriefing sessions" for care workers. She however thought that government workers should first be engaged in action learning. She also warned that we were consulting "the wrong officials", and that T-Net should never have received funding because their proposal was weak. I could not help feeling somewhat mislead and paranoid about the situation. What happened seemed to me a repetition of my own story that I tended to be eager to help others, only to let myself to be abused by individuals or the system. Did I get the story wrong from the manager of T-Net? Was the department "full of politics"? I subsequently consoled myself by letting go of worrying about the whole incident - not to become trapped in a power play with others. No one in a development context wants to be told what to do and how to behave. Perhaps, it would help others and myself if I would stay focused on free information exchange. Subsequently, from a meeting with health professions by the AIDS directorate about their HIV/AIDS care programme, it did appear that some of the issues that were raised by our report were receiving attention. My participants and I had voiced our concerns about home-based care and perhaps we were being heard. On a follow-up, some of the home-based care NPOs also informed me that they had started regular meetings where their care workers share and reflect on their work experiences. However, others maintained that they missed that networking they had with care workers from other organisations and wished for a more collaborative form of debriefing. What does my results mean in theory? The virtual conference page on "Something for Nothing" encouraged me to wonder about the costs and gains of voluntary work for each participant involved - the client of the home-based care worker, the volunteer, the NGO management, government, professionals � Are we building a "predatory [health care] culture" of "stalkers and victims"? (McLaren, 1995, as cited in Critical Methods Webpage). (I have placed my additions to quoted texts in brackets). What kind of traps do we set? I agree with Kevin William, who had posted a comment on my abstract, that one should be wary of just blaming "the government". None of us really want to be obstructionist. A blaming approach would also further a power struggle, holding in place behaviours and relationships that were problematic in the first place. We would thus maintain "human development [as] � a unique set of tactics through which power proliferates and extends itself beyond the range of other development strategies" (Vaughan M Dutton, Subjects of Development, virtual Critical Methods Conference). As DJ had highlighted: "Perhaps we are all predators [and victims] - academics, home workers, nurses, dr's, politicians?". The problem of power, voice and the co-option of community members by those dominant for their egotistic needs have been major concerns for participatory researchers in the development context (Hall, 1992). Many discussions on civil society focus on different kind of institutions or associations, their behaviour and the relations between them. Questions have been raised about how the policies of government and international aid policies affect the health care system and the work done by volunteers and community health activists in developing countries. Relatively little attention is however given to the question what actually motivates people to found certain institutions or to get involved in them, e.g. to become an �activist� (Buijs, 2002) or a voluntary care worker. From a constructivist perspective, each community care practitioner has a unique tendency to act (and be trapped) in a certain way. Our tendencies are closely related to the assumptions and myths that we hold about the world and how we should operate upon it. Analysing the care workers� frustration and their diary entries, they appeared to gravitate toward the following tendencies and virtues: Filling in for � Catering for all needs Sympathy Guilt Powerlessness and anger In need of moral support Morality Perseverance Being abused Loving kindness I gather that many of the care workers, like me, tend to get trapped in the moral domain. Perhaps, in our eagerness to help others we compromise ourselves. Our uncritical support of the government�s new home-based care approach (an ideology) puts us at risk of becoming victims of the (our) approach. Thus, each participant, including governmental official, NPO manager, professional and volunteer care worker could find it useful to start with self (Pistorius, 2000) and to engage in critical reflection about his or her approach to home-based care work. Perhaps care workers (like me) should not be so eager to help others and health organisations and look critically at the approach they are supporting. To my understanding, health care professionals, together with the Department of Health, non-governmental organisations and churches in poor communities in South Africa had recently taken a community-based approach to HIV/AIDS care and prevention. This approach rests on the assumptions that: Terminally ill people can be treated in the community - at home or in a hospice - and by volunteer workers who are community members Ideally, people prefer to die at home or in their community, maintaining personal dignity and contact with loved ones Community members can be trained to deliver community education, peer counselling and home-based care The HIV/AIDS epidemic will be curbed through community members� active involvement in treatment and prevention efforts Community-base care, primary health care and prevention are programmes that many of us fought for as part of our struggle for an equitable and community participatory health care system during the 1980s. Hence, it is understandable that we should rejoice that government together with community and professional players would embrace this approach. However, from my debriefing experience it is clear that home-base care not only poses gains, but also some serious emotional and financial costs. One would suppose that these costs were unexpected and that voluntary care workers engage and persevere in their work because they believe that home-based care could help them achieve the democratic health care system we all had in mind? What are the dynamics around voluntarism and home-based care in poor and developing communities? I found a fair amount of literature on voluntarism as a positive institution in society and how to be a good leader of voluntary workers (Cf. Voluntas. International Journal of Voluntary and Nonprofit Organizations; Nonprofit and Voluntary Sector Quarterly; and, Internet Nonprofit Center). There is a growing recognition of the importance of social capital in maintaining a healthy and vibrant civil society. Volunteering is viewed as a core component of social capital (Onyx & Leonard, 2002). In terms of my search, volunteer workers should benefit from an appreciative inquiry and the building of organisational skills. Perhaps my home-based care worker organisations and government are disorganised. I could however not find any reports on home-based care for the terminally ill that shows that the writer attempted to: (a) reflect in public on the difficulties that voluntary AIDS care workers experience, and (b) search for ways to deal with the challenges that care workers are faced with, e.g. care and support of the care worker. The few project reports that I had come across about this approach, were mostly presented in newspapers and newsletters. Some examples include: A report in the Sunday Times, August 25 2002, "They brought me back from death. Programme involved in row over UN funding takes the load off hospitals by treating HIV-positive people as outpatients" by Mawande Jubasi. During May 2002, Hospice Care Plus, Kentucky, received the innovation of the week, from The Peter F. Drucker Foundation for Nonprofit Management, for expanding hospice care to terminally ill patients who wish to remain at home while also offering individuals the opportunity to develop marketable skills (<http://drucker.org/innovation/innov-of-week/>). These care workers were paid by the family for their home care work, which included cleaning the patient�s room and doing house sitting. I also attended the African Conference on the Social Aspects of HIV/AIDS Research (SAHARA), organised by the Human Science Research Council, 1-4 September 2002 and was impressed that there were various presentations about home-based care projects (Cf. Modiba, 2002; Williams, 2002; Mundeta & Gomo, 2002;). These presentations however confirmed my concern that presenters mainly talked about their positive achievements. Only one presenter (Williams, 2002) highlighted that they were planning to study the impact that home-based care work has on youth care workers and that for their support they had tried to link youth care workers up with older care groups. The above-mentioned reports offered the following perceptions about the gains for different players from community and home-based care: Governmental clinics and hospitals can keep patient admissions down. The costs of health services and hospitalisations will be lowered. Community members who become volunteer workers gain skills and contacts that will make them employable. Volunteer workers are trained and recognised by reputable community and government organisations. Volunteer workers gain a sense of meaning and respect through their altruistic offering of community services. The terminally ill and their families can gain support for themselves and their family from volunteers whom they can respect and trust as of good reputation. HIV-positive people can secure support, for themselves and their family members, by offering their voluntary services to AIDS service organizations. Some of the SAHARA presentations had shed some light on my "debriefing experience". A presentation by Swartz (2002), on "The impact of local government HIV/AIDS programmes in South Africa", showed that home-based care projects are from amongst the most popular HIV/AIDS projects that community members embark on nowadays. Another enlightening presentation was by Mabetoa (2002), the HIV/AIDS director of the Department of Social Development, who gave a critical analysis on "The social impact of HIV/AIDS and the growing demand for social development services". She highlighted that although there was a growing demand for social development services at local community level, this were yet to be incorporated into HIV/AIDS programmes. HIV/AIDS programmes often focus on physical aspects, she said. The "Integrated Community Based Care and Support Model" is "an ideal situation and making it work has many challenges". Perhaps then, because it is a new approach, participants tend to emphasise positive gains, letting "negativities" remain in the background. What I had found helpful though, was to contrast how stories of home-based care work differed to my "debriefing experience". For example, the Red Cross in Southern Africa (Mundeta, 2002) had strong organisational resources - such as being international and successful in terms of funding - and had provided incentives and recognition for volunteers. These incentives include, an allowance, a bicycle, a uniform, food parcels for the volunteer as well as for patients, support groups, and networking conferences for volunteers. Furthermore, Vicky Timm, who made a presentation on "Being a hospice worker: Jay�s story", at the Critical Methods Conference, showed that her hospice worker was basically happy. His story contrasted with my care worker experiences - Jay�s hospice organisation had provided him an allowance, had support groups for care workers, and Jay did not have to grapple with challenges such as not having access to piped water, electricity, ambulances, social workers, medical services, being unemployed, etc. It is tough to work in a poor community. I urge anyone to try to do in a poor community what they are doing successfully in an affluent community. Health care is more expensive in poor communities; it is more expensive to maintain your health when you have no access to water and electricity. From my "debriefing experience, it seems that government and NGO health care organisations tighten their belts, and the volunteer workers pay the costs. Is that fair? Is that sustainable? As one Critical Methods Conference participant pointed out, their volunteer organisation collapsed because members were expected to use and offer their own resources to carry organisational activities. This confirm my suspicion that volunteers tend to be eager to help others, and support popular ideas, only to be abused by dominant individuals or the system. Unemployed voluntary care workers seem particularly at risk of being subjugated to the dominant ideas and perceptions that their programme planners hold. Thus, structural inequalities in their community and workplace are being maintained under the ideological banner of "community-based health care" and "democracy". Care workers may thus (tend to) become the victims of, and fall prey to, the community-based care programmes that are instituted by those in power. To turn an oppressive system around, care workers should be assisted to have "the knowledge, skills, values and attitudes to question, understand, interrogate and eventually act as change agents of structural inequalities in their place of employment" (Giroux, 1988, as cited on Critical Methods web page). Government officials, professionals and NGO managers should question whether their application of a new approach to things do not maintain the status quo (i.e. inequality), and do not make matters worse for others. It could also be helpful to reflect critically: Why do we expect home-based care work to be voluntary? Does voluntary work mean "no pay", or, a "not-for-profit" payment? Why is it that most home-based care workers are female? Do we expect from them to clean people�s rooms and to clean their wounds for free, because they are women? HIV/AIDS programme planners should thus take care of the values and psychosocial aspects underlying their approach and include care of the care worker into their budgets. What should be done? How should participants of home-base care take care of their approach and care of care workers? It could be helpful if all of role players engage in a process of critical self-reflection and share their reflections collectively. By starting with self, participants take cognisance of their personal tendencies and how this may interfere with their progress. Such a process may make it less likely that participants engage in blaming or defensive interaction, perpetuating a struggle approach to life. A sharing of reflections, including our stories of experiential learning and trial and error, are bound to lead to positive responses from others. Take for example the food parcels that home-based care workers can get for their clients from the Department of Welfare nowadays. One of the aspects of the debriefing sessions that the care workers valued most was that they could share their experiences and self-reflections with people outside their usual circle of contacts. My reflections were furthermore aided when I could share, and contrast, my experience with others elsewhere and during the Critical Methods Conference. It is through noticing how our experiences and contexts differ, that I can see a bigger picture. For now, I believe that we can create knowledge both individually and collectively through an appreciation of difference in Bateson�s sense - knowledge is information that makes a difference (Cf. Bateson, 1972, 1979). Cherishing one�s own and other people�s information (their difference and creativity), may offer an alternative and also more resourceful and socially responsible way of dealing with home-based care. References Bateson, G. (1972). Steps to an ecology of mind. New York: Jason Aronson. Bateson, G. (1979). Mind and nature. New York: Dutton. Buijs, G.J. (2002, July). Sources of Inspiration: Toward a Comparative Perspective on Why People Get Involved in the Third Sector. Paper presented at the International Society for Third-sector Research Fifth International Conference, Transforming Civil Society, Citizenship and Governance: The Third Sector in an Era of Global (Dis)order, Cape Town, South Africa. DJ, (2002, September). Comments on abstract. Voluntary HIV/AIDS home-based care work traps = a predatory health care system? Presented on 8th^{Qualitative virtual Critical Methods Conference, Something for Nothing: Subjectivity and society in the New Economy, Centre for Applied Psychology, University of South Africa, Pretoria.} Dutton, V. M. (2002, September). Subjects of Development. Abstract presented on 8th Qualitative virtual Critical Methods Conference, Something for Nothing: Subjectivity and society in the New Economy, Centre for Applied Psychology, University of South Africa, Pretoria. Giroux, H. (1988). The transformative intellectual. Cited on the 8th Qualitative virtual Critical Methods Conference, Something for Nothing: Subjectivity and society in the New Economy, Centre for Applied Psychology, University of South Africa, Pretoria. Hall, B.L. (1992). From margins to center? The development and purpose of participatory research. American Sociologist, 23(4), 15-28. Hospice Care Plus (2002, May). The Companion Program. Cited on The Peter F. Drucker Foundation for Nonprofit Management, Drucker Nonprofit Innovation Discovery Site, <http://drucker.org/innovation/innov-of-week/> and http://pfdf.org/innovation/innovation/innovation.asp?innov-id=159. Internet Nonprofit Center, Infromation for and about nonprofits, http://www.nonprofits.org/ William, K. (2002, September). Comments on abstract. Voluntary HIV/AIDS home-based care work traps = a predatory health care system? Presented on 8th Qualitative virtual Critical Methods Conference, Something for Nothing: Subjectivity and society in the New Economy, Centre for Applied Psychology, University of South Africa, Pretoria. Mabetoa, M. (2002, September). The social impact of HIV/AIDS and the growing demand for social development services. Paper presented at the African Conference on the Social Aspects of HIV/AIDS Research (SAHARA), Human Science Research Council, Pretoria. Jubasi, M. (2002, August 25) They brought me back from death. Programme involved in row over UN funding takes the load off hospitals by treating HIV-positive people as outpatients. Report in Sunday Times, p.13, South Africa. McLaren, P. (1995). Cultural Pedagogy and Predatory Culture. Book cited on the 8th Qualitative virtual Critical Methods Conference, Something for Nothing: Subjectivity and society in the New Economy, Centre for Applied Psychology, University of South Africa, Pretoria. Modiba, P. (2002, September). The integration of HIV/AIDS Care and Support into primary health care in Gauteng Province (South Africa). Paper presented at the African Conference on the Social Aspects of HIV/AIDS Research (SAHARA), Human Science Research Council, Pretoria. Mundeta, B. & Gomo, E. (2002, September). Red Cross Societies and HIV/AIDS: Southern African experiences and plans in prevention and care. Paper presented at the African Conference on the Social Aspects of HIV/AIDS Research (SAHARA), Human Science Research Council, Pretoria. Nonprofit and Voluntary Sector Quarterly, Sage Publications, Inc. Onyx, J. & Leonard, R. (2002, July). The relationship between formal and informal volunteering: A social capital framework. Paper presented at the International Society for Third-sector Research Fifth International Conference, Transforming Civil Society, Citizenship and Governance: The Third Sector in an Era of Global (Dis)order, Cape Town, South Africa. Pistorius, A.G. (2000). Participatory community development - a networking approach. Unpublished doctoral thesis, University of South Africa, Pretoria Swartz, L. (2002, September). The impact of local government HIV/AIDS programmes in South Africa. Paper presented at the African Conference on the Social Aspects of HIV/AIDS Research (SAHARA), Human Science Research Council, Pretoria. Timm, V. (2002, September). Being a hospice worker: Jay�s story. Paper presented on 8th Qualitative virtual Critical Methods Conference, Something for Nothing: Subjectivity and society in the New Economy, Centre for Applied Psychology, University of South Africa, Pretoria. Voluntas, International Journal of Voluntary and Nonprofit Organizations, http:// www. Istr.org/pubs/voluntas/ Williams, E. (2002, September). Increasing access to care and support for PLHA: Building the capacity of youth caregivers in rural Zambia. Paper presented at the African Conference on the Social Aspects of HIV/AIDS Research (SAHARA), Human Science Research Council, Pretoria.
	Peer reviews of this paper appear below.
	Review 1 Dear Annalie This is the first time that I engaged in a virutal review environment. Maybe my comments and suggestions are not applicable, but I would like to learn from you and the process. I read about three stories in your article. The first story is about the volunteers, the second about the process of involvement and the third story is your voice about your experiences as well as a reflection on the process. These three story lines are sometimes more visible than others. I would have appreciated a clearer description of your own story. In your abstract I wondered by whom the debriefing sessions were requested? What is the meaning of "a developmental orientation"? What was the "model for care worker self-development"? A richer dscirption of the contexts in which the care workers worked would have been helpful to understand the issues that they deal with. And I assume they were all women? Where they? Can I read "action learning" and "experiential learning" as describing the same concept? How did the group decide what topics to discuss? You said that the aim according to you was that they hand an opportunity to talk about their frustrations and traumatic experiences. I also saw something of a commitment and perseverance in the whole process. One of the issues that I also noted in the care workers verbal transcripts was guilt feelings. I wondered how that contributed to their involvement in the caring for others and how it played into the dynamics of exploitation. How were the themes determined that you discussed as commen themes pertinent to voluntary care work police and funding? And I was wondering about the emotional "cost" involved? Kind regards Vera Roos
	Review 2
	Author reply Dear Vera, Thank you for your helpful comments. I made some clarifying changes in the text. Kind regards Annalie

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10 Sep 2002 - would like to know more about care for care givers. Otherwise great ork done - uhiriwe mary

2 Aug 2002 - The politics of helping are intricate. It links somehow to Dutton's issues with development. Perhaps we are all predators - academics, home workers, nurses, dr's, politicians? - DJ

26 Jul 2002 - Fascinating... Who are the stalkers and who the victims though? I'd be wary of just blaming "the government". If they are being obstructionist - why? Your idea of wanting to look at the costs and gains for the different players seems like the right way to go, i.e. asking what's in it for each of the various players. Regarding the volunteers, I know there is a fair amount of literature on the dynamics of voluntarism in "third world" contexts. Might be worth looking into. Thanks for opening up the debate on this important issue. - Kevin Williams

Action learning and reflection with HIV/AIDS home-based care workers in Gauteng
8th Annual Qualitative/Critical Methods Conference - Critical Methods Society

Something for nothing

	Paper presented at the 8th Annual Qualitative Methods Conference: "Something for nothing" 1 May to 30 September 2002 (http://criticalmethods.org/p105.mv)
	Voluntary HIV/AIDS home-based care work traps = A predatory health care system? Annalie G. Pistorius Contact e-mail: [email protected] Affiliation: Department of Psychology, Medical University of Southern Africa
	Last year, I had engaged voluntary home-based care workers and HIV/AIDS peer counsellors in small group discussions, using action learning and encouraging each to keep a personal journal on their care work experiences. The need for the "debriefing of traumatised" home-based care workers was identified by a peer support training organisation together with a managing governmental official, HIV/AIDS counsellors, home-based care workers and their community organisations in Tshwane, South Africa. When the government official requested me to do "debriefing sessions" with the home-based care workers, and offered payment thereof, I was impressed about their serious attending to the care worker�s personal and community development challenges. At commencement of the sessions, I was also moved with the great number of volunteers, many but not all of them HIV-positive, mostly women, many mobilised by members of the health department and community groups in support of people living with HIV/AIDS and dying at home. I thought: "something positive is happening - community organisations are being sponsored to train community volunteers in peer counselling and home-based care". The voluntary workers opened up very easily and offered many personal stories about their home-based care experiences that made them feel traumatised and powerless. I was hoping to assume a developmental orientation, promoting more than mere crisis intervention. I managed to give the counsellors and care workers an opportunity to reflect on and share experiences related to an appreciation of their services, eg what motivated them to do this kind of work, their personal tendencies and how they dealt creatively with problems. They also voiced common dilemmas pertinent to policy-making and funding. Common themes included: being in the front line and having to deal with all the needs of the patient/client; the lack of multi-sectoral and inter-departmental co-operation; voluntarism requires incentives and material support; and, care givers are not always given the recognition they deserve, yet they are being co-opted for the selfish needs of the health sector. We also explored a model for care worker self-development, which entailed balancing power and control issues with facilitating information flow and creativity. My sessions were however stopped halfway through by the manager of the organisation that had arranged them. He informed me: "government decided to stop funding of small organisations". I responded by calling all participants together into a final session, pulling together their common themes and frustrations into a collective feedback report to the AIDS directorate of government. I thought that a shift to facilitating information flow would render a response, only to find that our government contact persons claimed that they had not received our report. Moreover, I was informed that it was the said organising NGO who's sponsorship was stopped, that government never requested "debriefing sessions", that we should not consult "the wrong officials", etc. I could not help feeling somewhat mislead and paranoid. What happened seemed to me a repetition of my story that I tended to be eager to help others, only to be abused by individuals or the system. The virtual conference page on "Something for Nothing" also encourage me now to wonder about the costs and gains of voluntary work for each participant involved - the client of the home-based care worker, the volunteer, the NGO management, government, professionals � Are we building a "predatory (health care) culture" of "stalkers and victims"? (McLaren, 1995). What kind of traps do we set?
	Introduction In this paper I present the experience I had with the debriefing of voluntary home-based care workers and HIV/AIDS peer counsellors in and around Tshwane (Pretoria) during 2001. I reflect on what proceeded when the sessions were stopped by the managing organisation when their governmental funding ended. I include extracts from the diary entries and inputs that the care workers had offered me concerning their experiences of home-based care, which we provided in a feedback report to the Gauteng HIV/AIDS Directorate of the Department of Health. I theorise on how different players (like me) might tend to be eager to help others while being uncritical of how our support of a new approach may make matters worse. I also include the responses I gained from others and during the Critical Methods Conference, searching for ways on how to turn the problem around. I finally offer some ideas on how participants of the home-based care approach could take care of themselves and care workers. Debriefing voluntary home-based care workers Last year, I had engaged voluntary home-based care workers and HIV/AIDS peer counsellors in small group discussions, using action learning and encouraging each to keep a personal journal on their care work experiences. The need for the "debriefing of traumatised" home-based care workers was identified by a peer support training organisation together with a managing governmental official, HIV/AIDS counsellors, home-based care workers and their community organisations in Tshwane, South Africa. When the government official requested me to do "debriefing sessions" with the home-based care workers, and offered payment thereof, I was impressed about their serious attending to the care worker�s personal and community development challenges. At commencement of the sessions, I was also moved with the great number of volunteers, many but not all of them HIV-positive, mostly women, many mobilised by members of the health department and community groups in support of people living with HIV/AIDS and dying at home. I thought: "something positive is happening - community organisations are being sponsored to train community volunteers in peer counselling and home-based care". The request for the "debriefing sessions" and offers of payment thereof also indicated their serious attending to the care worker�s personal and community development challenges. The training organisation (whom I will refer to as the Training Network, T-Net) served 18 CBOs in and around Thswane in Gauteng (including Hammanskraal and Cullinan). (T-Net is a pseudonym. I have used pseudonyms whenever the identities of individuals or organisations are at stake). The care workers and their organisations were based in poor and low to middle class communities in the townships and informal settlements around Pretoria. As these organisations were mostly small and developing and no fees were charged by T-Net for its services. Instead, the Gauteng HIV/AIDS Directorate provided T-Net funding to sponsor a manager�s salary, and the training sessions on home-based care, peer counselling and mentoring. The organisation impressed me with their networking approach to achieving their objectives. It had one manager (and a committee) who contracted independent professionals to carry out their training tasks. I understood that debriefing in the context of home based care and HIV/AIDS counselling entailed the aim to provide counsellors and care workers an opportunity to talk about their frustrations and traumatic experiences, ventilate emotions, and to consolidate these into an appreciative understanding. I also wanted to introduce a further aim, which was to prepare each care worker to reflect on his or her helping practices, to share their reflections with others and through collaborative reflection to generate some ideas on how to deal creatively with their problems and resources. I was hoping to engage my participants in a process of self-reflection and experiential learning, assuming a developmental orientation. The manager of T-Net and I started off with a meeting which all the care workers from the different client organisations attended, to discuss the need that was expressed for debriefing as well as the practicalities thereof. During this meeting, the care workers impressed me with their noble intentions and enthusiasm about home-based care work. I was impressed with their dedication to serve patients at home in return for nothing at all. Many of them expressed how their voluntary community work had given them a sense of meaning and purpose, because they were unemployed and feeling useless. Some of them just recently learned that they are HIV-positive. On exploring the need for debriefing, I found only a few care workers who felt traumatised by the way someone died. Most of the care workers� need for debriefing, centred on feelings of powerlessness and a lack of care worker support. "The policy of Department of Health is that we care and support the people at home as hospitals are full with few available beds. Many home care workers were mobilised by nurses and work hand-in-hand with them to help take care of patients at home and distribute their tablets. Hospitals are full and we have to care and support people at home. We are committed to do our work in the community voluntarily and the people we serve have no food. However, when we visit the homes of our patients, we are faced with no travelling allowance and no material support to assist our duties or the needs of our patients, such as dealing with the lack of ambulance services. Further, clinics and hospitals have become short staffed and many nurses have left the country. Care givers are thus expected to do more - filling in for the nurse." We all agreed that there was an urgent need for the debriefing sessions. I introduced them to action learning and collaborative action research. I requested them to each keep a personal diary in which they would describe problematic events and reflect on how they managed them. They were to share their notes in small group context and talk about their problem solving ideas. Where possible, each group would comprise of members from different organisations. The idea was that care workers would have the opportunity to exchange ideas with care workers elsewhere. Hopefully, from such a broader sharing of ideas new insights would also be generated. Subsequent to the first meeting, four groups of approximately 8 care workers per group engaged bi-monthly in debriefing sessions. The idea was that another round of four groups would follow thereafter, and so on for others. Participants were encouraged to keep personal diaries in their vernacular and translations were done during group sessions. During group discussions I aimed at attending to their personal style and organisational resources that related to their problem solving. The care workers were also encouraged to identify common themes and share creative ideas on ways to manage problems. The care workers� responses to my requests were surprisingly positive. Most of them impressed me with how dedicated they were at keeping their diaries and case notes. Keeping a diary made sense to them. As one care worker had put it: "Keeping a diary works well for problems solving, because you have to pause a bit and reflect on what you do from a distance. This gives you a chance to think critically about what you are going to do next, and not just going ahead and becoming overwhelmed by what happens". The care workers also seemed to enjoy opening up and comparing their experiences with care workers from other communities. The manager of T-Net had planned four sessions for the first four groups over a period of two months. However, the sessions were stopped halfway through, after they had engaged in two or three sessions, because T-Net�s governmental funding was stopped. The T-Net manager informed me: "government decided to stop funding small organisations". The funding policy of government had apparently shifted to the channelling of grants to organisations that have the capacity to manage large amounts of funds. This raised concern for the livelihood of small and developing organisations and the effectiveness of channelling their funding under the auspices of bigger organisations and consortia. Another concern was that a once-off seed fund for small, and developing Non-Profit Organisations (NPOs) were problematic for their survival. Social policymaking that showed concern for HIV/AIDS community workers and their developing organisations seemed critical. I responded by calling all participants together in a final session. Through group work, we identified common themes and stories from their diaries, my notes from sessions and our group discussion. Hence, participants and I pulled together their common themes and frustrations into a collective feedback report to the Gauteng AIDS Directorate of the Department of Health. The specific aims of this report were to: "(a) give voice to the problems that HIV/AIDS community workers and their organisations experience in the course of their community services; (b) promote an appreciation of the valuable social capital that South Africa enjoys in the field of HIV/AIDS community-based health and welfare services, by community workers in co-operation with government; and (c) give information that was pertinent to policy making and funding arrangements of government". We also requested a response from the HIV/AIDS Directorate on our report, and about policy and funding plans concerning HIV/AIDS workers and their organisations. What follows are extracts from our report, including my notes and diary inputs from the care workers. The report dealt with the home-based care workers� resources, motivation, experiences and problems, and common themes pertinent to voluntary care worker policy and funding. The care workers and their managing committees gave their permission that their inputs are included in reports to government, professionals and the public. *Organisational Resources and Social Capital* "EACH in Eersterust was started 10 years ago by clinic sisters and community members. We did a research and identified cancer and psychiatric patients as in need. We started support groups with the clients and families. Spare rooms at the clinic were given to the organisation cost free. Our activities were done with the assistance of the sister in charge at the clinic, nurses and the occupational therapist from the University of Pretoria. We have twelve volunteers. We have different support groups from Monday to Thursday for patients with stroke, disabilities, arthritis, cancer, HIV/AIDS and psychiatry. In the afternoon after each group, the sister goes out with the volunteers to visit the sick. We started home-based care funded by the Department of Health in 2000. We have five home caregivers who were trained. They serve patients with stroke, TB, cancer, diabetes, mental health and AIDS. When their patients die, they prepare the family and assist them through the process. We are in the process of erecting a Hospice Respite Centre, co-funded by the Japanese Embassy. We do fund rising three times a year for different projects". "Kopano ke Maatla (Atteridgeville) was started in 1999. We are 35 caregivers. We do home based care for patients with stroke HIV/AIDS and are Dots supporters for TB patients. We see 3 to 5 patients each per week, and do visits three to four times per week. We support 6-10 TB patients per day. We do it because we have something to do, can share with them and care for them". "The Institute for Primary Health (Soshanguve) was established in 1994. The organisation is registered under section 21 and the NPO Welfare act. They have four full time staff, 10 full time volunteers who receive R 500 per month incentive from the Department of Health. There is a further 20 volunteer support group. The organisation also has a management committee and a board of directors. Activities include home based care, school talks, counselling, radio talk shows, church outreach and a youth programme". "Thembelisha (Mamelodi) has 20 caregivers. Church members of the Apostic Faith Mission started this project in February 2000. Their aim is to help people who are terminally ill and who are living alone and dying with no one to look after. As a church organisation a lot of people bring problems at church and we realised that there is a need to help the community, which is suffering from HIV/AIDS and related diseases. Initially, we did not have anything, e.g. medicine, gloves and money for transport to go door-to-door visiting our patients. The church now gives us Sunday offerings to help for transport. We are operating in Stanza Bopape and around Nellmapius. We are being helped by our local clinics in Stanza I and II. It is our spirituality that makes us keep on going - we do it for the love and moral support we can give others". Volunteer workers do not have full time employment and are often not employed at all. Some of them sell fat cakes, do food gardens, work at cash loans, make beads, depend on their husbands or parents, do piece jobs or knit jerseys. Many volunteers were recruited by retired sisters or sisters at clinics from the Department of Health. Some initiated their organisations from their churches, and belong to burial societies or church groups. "Thusong Health Project in Pretoria offers services to sex workers. Some sex workers want to change their job. We are now working on establishing a job creation project for them, starting with dressmaking". *Having to cater for all needs of the patient and family* �The problem is that your patients become fully dependent on you. On your visit you find that they do not have food, and they can�t take the medication you bring them without food. Even when their condition is such that they need to see a doctor, their family has no money for transport. They live in conditions where there is no piped water, and you have to carry many buckets of water into their room so that you can wash them. You also leave sufficient buckets of water in their room so that a family member can wash them for the two days that you will not be visiting. On the third day you however find that no-one washed the patient." "Although you have explained to your patient and the family about how home based care work, they are waiting for you as their saviour. You wonder now, how should you influence the family?" "Most of us have five patients whom we visit three times during the week. The family however calls us over weekends to attend to a crisis and to do the patients� dressing". "One of my patients once asked me for money to buy some fruit on his way to the hospital but I refused. Thereafter I felt so guilty that I bought a bag of oranges and sent it after him to hospital". "It is difficult to decide when to give and when not and dealing with your guilt. There is this bible story about the women who refused to help this stranger who asked for help, because she was waiting for Jesus to come to her door. But thereafter she found that the stranger whom she rejected was Jesus". "There was this one patient of ours who lay dead in her bed for three days, her baby still sucking and the husband was just sitting there drinking. This made me feel disturbed". "Another patient�s bedsores were that septic that the room had a smell. When I went to see my doctor, I cried and wanted him to wash the smell from my face". "The husband says �you stole my wife� when you refer her to a hospice. The husband is not dealing with the illness." "Our patients are the poorest of the poor, they give use many complaints and always wants something to eat. With no support from elsewhere, it now looks like it is your burden. The Health Department should support home caregivers and not leave them empty-handed. They should give us food parcels to hand out". "Hospitals dump dying patients on you and the care giver is being accused when the patient is worse. Caregivers get burnout and frustrations because families are not helpful and start to blame care givers if something happen to their sick person. They load all their problems on the caregiver especially after the death of the patient". "At times when I find my patient being angry and the family is also angry with him, I feel trapped between them not knowing what to do - how do I create a peaceful environment, how do I deal with powerlessness and anger?" "The patients that are referred to us are critical. Often their families abandon them and the hospital does not treat them - they are now dependant on the home care giver." "We have problems that we don�t know how to solve, like transport for patients and money for it. We go from pillar to post to get someone to offer a car, an ambulance and a donation to pay for the petrol. We are too few - we cannot reach everyone. If policy makers could see how organisations are struggling, do a research of organisations. People down here, their organisations have nothing. People up there should see and touch links down here. We should get a push, moral support. It is dark down here - someone should give light. We need support, even our youth". *The disabled* "Many of the families that we care for have problems with disabled members at home. For example, this one granny is taking care of her daughter�s child who is mentally disabled. She cannot send him to special school because she says she has no money for school fees. She says the Social welfare cannot help her, and she cannot remember with whom she talked. When I asked her out about her problem to get the child�s disability fund, it came out that the child does not have a birth certificate, and the mother in Johannesburg does not cooperate, and the social worker here does not do home visits." "There are no wheel chairs for people with stroke". *Dealing with denial* "People move around, especially after they had tested HIV positive. They cannot face their families and their friends reject them". "There is this one youth that just sits with his head in his hands. When I try and talk to him he chases me away". "My one client is HIV positive, but she does not tell her husband". "This year I buried four girls from one boyfriend. It is difficult to deal with denial, one way that works is to just keep on giving information and to make sure that people know where to get help and support". *Recognition and support from nurses, doctors and social workers - some successes and some let downs* "We as care givers, are committed to do our work in the community voluntarily and the people we serve have no food. The policy of DOH is that we care and support the people at home as hospitals are full with few available beds. However, when we visit the homes of our patients, we are faced with no travelling allowance and no material support to assist our duties or the needs of our patients". "Nurses ignore us when we want to assist them. Some even use abusive language that makes us angry. We even feel like giving up because we are not getting any incentives for doing the work we are doing voluntarily". "Some doctors are supportive and even treat our patients for free as long as the caregiver is present". "Social workers are problematic - they always have an excuse that they have no transport to visit patients. So the caregivers are pressurised to do something for the patients and have to pressurise social workers to do something". "Our caregivers always ask about vacant houses that could be used for home care or hospice. With their efforts we will in future run our own hospice in Soshanguve. Already, Legae Clinic donated 20 beds and a 13-roomed house has been given to us. We are just waiting for the finalisation of papers". "Our caregivers care for all patients with all their sicknesses at home. They thus underwent a three-day DOTS workshop at Tlamelong Clinic. 20 caregivers in 2 groups attended the workshop. No transport funds were provided. They were however grateful of the training opportunity provided to them". "We believe that networking and partnership with all stakeholders are important. So caregivers are taking initiative to introduce themselves so as to get moral support and donations, to be able to help those in need." "Another problem with social workers is that they are absent in new settlement areas - they quit to work in the city". "A big problem is that in some of our areas the social workers and clinic sisters do not recognise our counsellors, even though they received training through T-Net. The Department of Health should introduce them to the clinics". *Hospices, orphanages and child headed families* "There are few hospices and many orphans are left to fend for themselves and turn to the street". "One AIDS patient died and lefts four kids, who were taken to their uncle. The second-born did not get along with him and stayed at the shack. She got raped, but runs away when I approach her". "Some children are left alone, no one to support them with food and everything they want. Children no longer go to school. Some orphans do not have birth certificates and if we want to help them to get some grants this becomes a problem. There is also a problem for those who are from 7 years and up - they are not allowed to get any grant". *Voluntarism and incentives* "Some of us get incentives such as a transport allowance, R 500 for voluntary work and a diploma in Home Based Care and peer counselling." *Co-optation of People Living With AIDS who serve as care givers and HIV/AIDS counsellors* "We, as the Success Support Group don�t have the resources to take care of our family and taking care of our People With AIDS (PWAs). Our group does counselling and awareness raising, home and hospital visits and exhibitions. And the most important thing is SUPPORT - PWAs need moral support. As the Success Support Group, we have a big big problem about people wanting to make money through us PWAs. For instance, an individual started a project for PWAs through F-Company, S and Child Welfare. While he was looking forward to satisfy his needs and to use PWAs, we gained nothing even though we were bribed by his offer to give our children money for school and pre-school. Many people advised us that we must be careful of him and that he was no longer working at S but still used the name of F-Company. Another example is M-Hospice who gets food donations from W for PWAs while PWAs get nothing. The Success Group is trained to do counselling but while M-Training do accommodate us with office space, they do not provide for the use of other facilities such as telephone and fax. Worst of all, they ignore us and invite people from outside to do counselling. The other problem is when there is an AIDS awareness event, we volunteer to help them but at the end of the day we are nothing because they don�t even give mention of our names or recognise our group. M-H gain funding from our AIDS status - this, they do by expecting us to disclose our status at short notice to visitors for R 50, we however feel depressed and used thereafter." *Common themes pertinent to voluntary care work policy and funding* The care workers and I highlighted the following themes from their diaries and our collective discussion: Caregivers cater for all needs of the patient and family - social welfare, economic, physical and psychological health Their services are dependent on good linking and co-operation with doctors, sisters, nurses, social workers, psychologists and their organisations Voluntarism requires incentives and material support Care givers do an excellent job in taking care of their patients and providing information to family members to assist them to deal with diseases Hospices and orphanages are lacking and are being developed through government-community organisation The disabled and resources for them require urgent attention Care givers, the role of the community and their organisational structures (eg church groups), are not always given the recognition they deserve, and are often abused and co-opted for the selfish needs of the health professional and the NGO sector Developing organisations, often lacking in resources and ability to secure funding, are not necessarily unskilled or ineffective in the services that they offer to the public. My subsequent progress I thought that an approach of information exchange would facilitate a response from government, only to find that our government contact persons claimed that they had not received our report. Subsequently, the manager of T-Net arranged a meeting with a managing departmental official, and invited some care workers and me to attend. At this meeting I was surprised to learn that it was T-Net�s sponsorship that was stopped, and not all small organisations as I were made to (or had chosen) to believe. The government official, with whom we had a meeting, also informed us that the department never requested "debriefing sessions" for care workers. She however thought that government workers should first be engaged in action learning. She also warned that we were consulting "the wrong officials", and that T-Net should never have received funding because their proposal was weak. I could not help feeling somewhat mislead and paranoid about the situation. What happened seemed to me a repetition of my own story that I tended to be eager to help others, only to let myself to be abused by individuals or the system. Did I get the story wrong from the manager of T-Net? Was the department "full of politics"? I subsequently consoled myself by letting go of worrying about the whole incident - not to become trapped in a power play with others. No one in a development context wants to be told what to do and how to behave. Perhaps, it would help others and myself if I would stay focused on free information exchange. Subsequently, from a meeting with health professions by the AIDS directorate about their HIV/AIDS care programme, it did appear that some of the issues that were raised by our report were receiving attention. My participants and I had voiced our concerns about home-based care and perhaps we were being heard. On a follow-up, some of the home-based care NPOs also informed me that they had started regular meetings where their care workers share and reflect on their work experiences. However, others maintained that they missed that networking they had with care workers from other organisations and wished for a more collaborative form of debriefing. What does my results mean in theory? The virtual conference page on "Something for Nothing" encouraged me to wonder about the costs and gains of voluntary work for each participant involved - the client of the home-based care worker, the volunteer, the NGO management, government, professionals � Are we building a "predatory [health care] culture" of "stalkers and victims"? (McLaren, 1995, as cited in Critical Methods Webpage). (I have placed my additions to quoted texts in brackets). What kind of traps do we set? I agree with Kevin William, who had posted a comment on my abstract, that one should be wary of just blaming "the government". None of us really want to be obstructionist. A blaming approach would also further a power struggle, holding in place behaviours and relationships that were problematic in the first place. We would thus maintain "human development [as] � a unique set of tactics through which power proliferates and extends itself beyond the range of other development strategies" (Vaughan M Dutton, Subjects of Development, virtual Critical Methods Conference). As DJ had highlighted: "Perhaps we are all predators [and victims] - academics, home workers, nurses, dr's, politicians?". The problem of power, voice and the co-option of community members by those dominant for their egotistic needs have been major concerns for participatory researchers in the development context (Hall, 1992). Many discussions on civil society focus on different kind of institutions or associations, their behaviour and the relations between them. Questions have been raised about how the policies of government and international aid policies affect the health care system and the work done by volunteers and community health activists in developing countries. Relatively little attention is however given to the question what actually motivates people to found certain institutions or to get involved in them, e.g. to become an �activist� (Buijs, 2002) or a voluntary care worker. From a constructivist perspective, each community care practitioner has a unique tendency to act (and be trapped) in a certain way. Our tendencies are closely related to the assumptions and myths that we hold about the world and how we should operate upon it. Analysing the care workers� frustration and their diary entries, they appeared to gravitate toward the following tendencies and virtues: Filling in for � Catering for all needs Sympathy Guilt Powerlessness and anger In need of moral support Morality Perseverance Being abused Loving kindness I gather that many of the care workers, like me, tend to get trapped in the moral domain. Perhaps, in our eagerness to help others we compromise ourselves. Our uncritical support of the government�s new home-based care approach (an ideology) puts us at risk of becoming victims of the (our) approach. Thus, each participant, including governmental official, NPO manager, professional and volunteer care worker could find it useful to start with self (Pistorius, 2000) and to engage in critical reflection about his or her approach to home-based care work. Perhaps care workers (like me) should not be so eager to help others and health organisations and look critically at the approach they are supporting. To my understanding, health care professionals, together with the Department of Health, non-governmental organisations and churches in poor communities in South Africa had recently taken a community-based approach to HIV/AIDS care and prevention. This approach rests on the assumptions that: Terminally ill people can be treated in the community - at home or in a hospice - and by volunteer workers who are community members Ideally, people prefer to die at home or in their community, maintaining personal dignity and contact with loved ones Community members can be trained to deliver community education, peer counselling and home-based care The HIV/AIDS epidemic will be curbed through community members� active involvement in treatment and prevention efforts Community-base care, primary health care and prevention are programmes that many of us fought for as part of our struggle for an equitable and community participatory health care system during the 1980s. Hence, it is understandable that we should rejoice that government together with community and professional players would embrace this approach. However, from my debriefing experience it is clear that home-base care not only poses gains, but also some serious emotional and financial costs. One would suppose that these costs were unexpected and that voluntary care workers engage and persevere in their work because they believe that home-based care could help them achieve the democratic health care system we all had in mind? What are the dynamics around voluntarism and home-based care in poor and developing communities? I found a fair amount of literature on voluntarism as a positive institution in society and how to be a good leader of voluntary workers (Cf. Voluntas. International Journal of Voluntary and Nonprofit Organizations; Nonprofit and Voluntary Sector Quarterly; and, Internet Nonprofit Center). There is a growing recognition of the importance of social capital in maintaining a healthy and vibrant civil society. Volunteering is viewed as a core component of social capital (Onyx & Leonard, 2002). In terms of my search, volunteer workers should benefit from an appreciative inquiry and the building of organisational skills. Perhaps my home-based care worker organisations and government are disorganised. I could however not find any reports on home-based care for the terminally ill that shows that the writer attempted to: (a) reflect in public on the difficulties that voluntary AIDS care workers experience, and (b) search for ways to deal with the challenges that care workers are faced with, e.g. care and support of the care worker. The few project reports that I had come across about this approach, were mostly presented in newspapers and newsletters. Some examples include: A report in the Sunday Times, August 25 2002, "They brought me back from death. Programme involved in row over UN funding takes the load off hospitals by treating HIV-positive people as outpatients" by Mawande Jubasi. During May 2002, Hospice Care Plus, Kentucky, received the innovation of the week, from The Peter F. Drucker Foundation for Nonprofit Management, for expanding hospice care to terminally ill patients who wish to remain at home while also offering individuals the opportunity to develop marketable skills (<http://drucker.org/innovation/innov-of-week/>). These care workers were paid by the family for their home care work, which included cleaning the patient�s room and doing house sitting. I also attended the African Conference on the Social Aspects of HIV/AIDS Research (SAHARA), organised by the Human Science Research Council, 1-4 September 2002 and was impressed that there were various presentations about home-based care projects (Cf. Modiba, 2002; Williams, 2002; Mundeta & Gomo, 2002;). These presentations however confirmed my concern that presenters mainly talked about their positive achievements. Only one presenter (Williams, 2002) highlighted that they were planning to study the impact that home-based care work has on youth care workers and that for their support they had tried to link youth care workers up with older care groups. The above-mentioned reports offered the following perceptions about the gains for different players from community and home-based care: Governmental clinics and hospitals can keep patient admissions down. The costs of health services and hospitalisations will be lowered. Community members who become volunteer workers gain skills and contacts that will make them employable. Volunteer workers are trained and recognised by reputable community and government organisations. Volunteer workers gain a sense of meaning and respect through their altruistic offering of community services. The terminally ill and their families can gain support for themselves and their family from volunteers whom they can respect and trust as of good reputation. HIV-positive people can secure support, for themselves and their family members, by offering their voluntary services to AIDS service organizations. Some of the SAHARA presentations had shed some light on my "debriefing experience". A presentation by Swartz (2002), on "The impact of local government HIV/AIDS programmes in South Africa", showed that home-based care projects are from amongst the most popular HIV/AIDS projects that community members embark on nowadays. Another enlightening presentation was by Mabetoa (2002), the HIV/AIDS director of the Department of Social Development, who gave a critical analysis on "The social impact of HIV/AIDS and the growing demand for social development services". She highlighted that although there was a growing demand for social development services at local community level, this were yet to be incorporated into HIV/AIDS programmes. HIV/AIDS programmes often focus on physical aspects, she said. The "Integrated Community Based Care and Support Model" is "an ideal situation and making it work has many challenges". Perhaps then, because it is a new approach, participants tend to emphasise positive gains, letting "negativities" remain in the background. What I had found helpful though, was to contrast how stories of home-based care work differed to my "debriefing experience". For example, the Red Cross in Southern Africa (Mundeta, 2002) had strong organisational resources - such as being international and successful in terms of funding - and had provided incentives and recognition for volunteers. These incentives include, an allowance, a bicycle, a uniform, food parcels for the volunteer as well as for patients, support groups, and networking conferences for volunteers. Furthermore, Vicky Timm, who made a presentation on "Being a hospice worker: Jay�s story", at the Critical Methods Conference, showed that her hospice worker was basically happy. His story contrasted with my care worker experiences - Jay�s hospice organisation had provided him an allowance, had support groups for care workers, and Jay did not have to grapple with challenges such as not having access to piped water, electricity, ambulances, social workers, medical services, being unemployed, etc. It is tough to work in a poor community. I urge anyone to try to do in a poor community what they are doing successfully in an affluent community. Health care is more expensive in poor communities; it is more expensive to maintain your health when you have no access to water and electricity. From my "debriefing experience, it seems that government and NGO health care organisations tighten their belts, and the volunteer workers pay the costs. Is that fair? Is that sustainable? As one Critical Methods Conference participant pointed out, their volunteer organisation collapsed because members were expected to use and offer their own resources to carry organisational activities. This confirm my suspicion that volunteers tend to be eager to help others, and support popular ideas, only to be abused by dominant individuals or the system. Unemployed voluntary care workers seem particularly at risk of being subjugated to the dominant ideas and perceptions that their programme planners hold. Thus, structural inequalities in their community and workplace are being maintained under the ideological banner of "community-based health care" and "democracy". Care workers may thus (tend to) become the victims of, and fall prey to, the community-based care programmes that are instituted by those in power. To turn an oppressive system around, care workers should be assisted to have "the knowledge, skills, values and attitudes to question, understand, interrogate and eventually act as change agents of structural inequalities in their place of employment" (Giroux, 1988, as cited on Critical Methods web page). Government officials, professionals and NGO managers should question whether their application of a new approach to things do not maintain the status quo (i.e. inequality), and do not make matters worse for others. It could also be helpful to reflect critically: Why do we expect home-based care work to be voluntary? Does voluntary work mean "no pay", or, a "not-for-profit" payment? Why is it that most home-based care workers are female? Do we expect from them to clean people�s rooms and to clean their wounds for free, because they are women? HIV/AIDS programme planners should thus take care of the values and psychosocial aspects underlying their approach and include care of the care worker into their budgets. What should be done? How should participants of home-base care take care of their approach and care of care workers? It could be helpful if all of role players engage in a process of critical self-reflection and share their reflections collectively. By starting with self, participants take cognisance of their personal tendencies and how this may interfere with their progress. Such a process may make it less likely that participants engage in blaming or defensive interaction, perpetuating a struggle approach to life. A sharing of reflections, including our stories of experiential learning and trial and error, are bound to lead to positive responses from others. Take for example the food parcels that home-based care workers can get for their clients from the Department of Welfare nowadays. One of the aspects of the debriefing sessions that the care workers valued most was that they could share their experiences and self-reflections with people outside their usual circle of contacts. My reflections were furthermore aided when I could share, and contrast, my experience with others elsewhere and during the Critical Methods Conference. It is through noticing how our experiences and contexts differ, that I can see a bigger picture. For now, I believe that we can create knowledge both individually and collectively through an appreciation of difference in Bateson�s sense - knowledge is information that makes a difference (Cf. Bateson, 1972, 1979). Cherishing one�s own and other people�s information (their difference and creativity), may offer an alternative and also more resourceful and socially responsible way of dealing with home-based care. 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Abstract presented on 8th Qualitative virtual Critical Methods Conference, Something for Nothing: Subjectivity and society in the New Economy, Centre for Applied Psychology, University of South Africa, Pretoria. Giroux, H. (1988). The transformative intellectual. Cited on the 8th Qualitative virtual Critical Methods Conference, Something for Nothing: Subjectivity and society in the New Economy, Centre for Applied Psychology, University of South Africa, Pretoria. Hall, B.L. (1992). From margins to center? The development and purpose of participatory research. American Sociologist, 23(4), 15-28. Hospice Care Plus (2002, May). The Companion Program. Cited on The Peter F. Drucker Foundation for Nonprofit Management, Drucker Nonprofit Innovation Discovery Site, <http://drucker.org/innovation/innov-of-week/> and http://pfdf.org/innovation/innovation/innovation.asp?innov-id=159. Internet Nonprofit Center, Infromation for and about nonprofits, http://www.nonprofits.org/ William, K. (2002, September). Comments on abstract. Voluntary HIV/AIDS home-based care work traps = a predatory health care system? Presented on 8th Qualitative virtual Critical Methods Conference, Something for Nothing: Subjectivity and society in the New Economy, Centre for Applied Psychology, University of South Africa, Pretoria. Mabetoa, M. (2002, September). The social impact of HIV/AIDS and the growing demand for social development services. Paper presented at the African Conference on the Social Aspects of HIV/AIDS Research (SAHARA), Human Science Research Council, Pretoria. Jubasi, M. (2002, August 25) They brought me back from death. Programme involved in row over UN funding takes the load off hospitals by treating HIV-positive people as outpatients. Report in Sunday Times, p.13, South Africa. McLaren, P. (1995). Cultural Pedagogy and Predatory Culture. Book cited on the 8th Qualitative virtual Critical Methods Conference, Something for Nothing: Subjectivity and society in the New Economy, Centre for Applied Psychology, University of South Africa, Pretoria. Modiba, P. (2002, September). The integration of HIV/AIDS Care and Support into primary health care in Gauteng Province (South Africa). Paper presented at the African Conference on the Social Aspects of HIV/AIDS Research (SAHARA), Human Science Research Council, Pretoria. Mundeta, B. & Gomo, E. (2002, September). Red Cross Societies and HIV/AIDS: Southern African experiences and plans in prevention and care. Paper presented at the African Conference on the Social Aspects of HIV/AIDS Research (SAHARA), Human Science Research Council, Pretoria. Nonprofit and Voluntary Sector Quarterly, Sage Publications, Inc. Onyx, J. & Leonard, R. (2002, July). The relationship between formal and informal volunteering: A social capital framework. Paper presented at the International Society for Third-sector Research Fifth International Conference, Transforming Civil Society, Citizenship and Governance: The Third Sector in an Era of Global (Dis)order, Cape Town, South Africa. Pistorius, A.G. (2000). Participatory community development - a networking approach. Unpublished doctoral thesis, University of South Africa, Pretoria Swartz, L. (2002, September). The impact of local government HIV/AIDS programmes in South Africa. Paper presented at the African Conference on the Social Aspects of HIV/AIDS Research (SAHARA), Human Science Research Council, Pretoria. Timm, V. (2002, September). Being a hospice worker: Jay�s story. Paper presented on 8th Qualitative virtual Critical Methods Conference, Something for Nothing: Subjectivity and society in the New Economy, Centre for Applied Psychology, University of South Africa, Pretoria. Voluntas, International Journal of Voluntary and Nonprofit Organizations, http:// www. Istr.org/pubs/voluntas/ Williams, E. (2002, September). Increasing access to care and support for PLHA: Building the capacity of youth caregivers in rural Zambia. Paper presented at the African Conference on the Social Aspects of HIV/AIDS Research (SAHARA), Human Science Research Council, Pretoria.
	Peer reviews of this paper appear below.
	Review 1 Dear Annalie This is the first time that I engaged in a virutal review environment. Maybe my comments and suggestions are not applicable, but I would like to learn from you and the process. I read about three stories in your article. The first story is about the volunteers, the second about the process of involvement and the third story is your voice about your experiences as well as a reflection on the process. These three story lines are sometimes more visible than others. I would have appreciated a clearer description of your own story. In your abstract I wondered by whom the debriefing sessions were requested? What is the meaning of "a developmental orientation"? What was the "model for care worker self-development"? A richer dscirption of the contexts in which the care workers worked would have been helpful to understand the issues that they deal with. And I assume they were all women? Where they? Can I read "action learning" and "experiential learning" as describing the same concept? How did the group decide what topics to discuss? You said that the aim according to you was that they hand an opportunity to talk about their frustrations and traumatic experiences. I also saw something of a commitment and perseverance in the whole process. One of the issues that I also noted in the care workers verbal transcripts was guilt feelings. I wondered how that contributed to their involvement in the caring for others and how it played into the dynamics of exploitation. How were the themes determined that you discussed as commen themes pertinent to voluntary care work police and funding? And I was wondering about the emotional "cost" involved? Kind regards Vera Roos
	Review 2
	Author reply Dear Vera, Thank you for your helpful comments. I made some clarifying changes in the text. Kind regards Annalie

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Action learning and reflection with HIV/AIDS home-based care workers in Gauteng
8th Annual Qualitative/Critical Methods Conference - Critical Methods Society

Something for nothing

	Paper presented at the 8th Annual Qualitative Methods Conference: "Something for nothing" 1 May to 30 September 2002 (http://criticalmethods.org/p105.mv)
	Voluntary HIV/AIDS home-based care work traps = A predatory health care system? Annalie G. Pistorius Contact e-mail: [email protected] Affiliation: Department of Psychology, Medical University of Southern Africa
	Last year, I had engaged voluntary home-based care workers and HIV/AIDS peer counsellors in small group discussions, using action learning and encouraging each to keep a personal journal on their care work experiences. The need for the "debriefing of traumatised" home-based care workers was identified by a peer support training organisation together with a managing governmental official, HIV/AIDS counsellors, home-based care workers and their community organisations in Tshwane, South Africa. When the government official requested me to do "debriefing sessions" with the home-based care workers, and offered payment thereof, I was impressed about their serious attending to the care worker�s personal and community development challenges. At commencement of the sessions, I was also moved with the great number of volunteers, many but not all of them HIV-positive, mostly women, many mobilised by members of the health department and community groups in support of people living with HIV/AIDS and dying at home. I thought: "something positive is happening - community organisations are being sponsored to train community volunteers in peer counselling and home-based care". The voluntary workers opened up very easily and offered many personal stories about their home-based care experiences that made them feel traumatised and powerless. I was hoping to assume a developmental orientation, promoting more than mere crisis intervention. I managed to give the counsellors and care workers an opportunity to reflect on and share experiences related to an appreciation of their services, eg what motivated them to do this kind of work, their personal tendencies and how they dealt creatively with problems. They also voiced common dilemmas pertinent to policy-making and funding. Common themes included: being in the front line and having to deal with all the needs of the patient/client; the lack of multi-sectoral and inter-departmental co-operation; voluntarism requires incentives and material support; and, care givers are not always given the recognition they deserve, yet they are being co-opted for the selfish needs of the health sector. We also explored a model for care worker self-development, which entailed balancing power and control issues with facilitating information flow and creativity. My sessions were however stopped halfway through by the manager of the organisation that had arranged them. He informed me: "government decided to stop funding of small organisations". I responded by calling all participants together into a final session, pulling together their common themes and frustrations into a collective feedback report to the AIDS directorate of government. I thought that a shift to facilitating information flow would render a response, only to find that our government contact persons claimed that they had not received our report. Moreover, I was informed that it was the said organising NGO who's sponsorship was stopped, that government never requested "debriefing sessions", that we should not consult "the wrong officials", etc. I could not help feeling somewhat mislead and paranoid. What happened seemed to me a repetition of my story that I tended to be eager to help others, only to be abused by individuals or the system. The virtual conference page on "Something for Nothing" also encourage me now to wonder about the costs and gains of voluntary work for each participant involved - the client of the home-based care worker, the volunteer, the NGO management, government, professionals � Are we building a "predatory (health care) culture" of "stalkers and victims"? (McLaren, 1995). What kind of traps do we set?
	Introduction In this paper I present the experience I had with the debriefing of voluntary home-based care workers and HIV/AIDS peer counsellors in and around Tshwane (Pretoria) during 2001. I reflect on what proceeded when the sessions were stopped by the managing organisation when their governmental funding ended. I include extracts from the diary entries and inputs that the care workers had offered me concerning their experiences of home-based care, which we provided in a feedback report to the Gauteng HIV/AIDS Directorate of the Department of Health. I theorise on how different players (like me) might tend to be eager to help others while being uncritical of how our support of a new approach may make matters worse. I also include the responses I gained from others and during the Critical Methods Conference, searching for ways on how to turn the problem around. I finally offer some ideas on how participants of the home-based care approach could take care of themselves and care workers. Debriefing voluntary home-based care workers Last year, I had engaged voluntary home-based care workers and HIV/AIDS peer counsellors in small group discussions, using action learning and encouraging each to keep a personal journal on their care work experiences. The need for the "debriefing of traumatised" home-based care workers was identified by a peer support training organisation together with a managing governmental official, HIV/AIDS counsellors, home-based care workers and their community organisations in Tshwane, South Africa. When the government official requested me to do "debriefing sessions" with the home-based care workers, and offered payment thereof, I was impressed about their serious attending to the care worker�s personal and community development challenges. At commencement of the sessions, I was also moved with the great number of volunteers, many but not all of them HIV-positive, mostly women, many mobilised by members of the health department and community groups in support of people living with HIV/AIDS and dying at home. I thought: "something positive is happening - community organisations are being sponsored to train community volunteers in peer counselling and home-based care". The request for the "debriefing sessions" and offers of payment thereof also indicated their serious attending to the care worker�s personal and community development challenges. The training organisation (whom I will refer to as the Training Network, T-Net) served 18 CBOs in and around Thswane in Gauteng (including Hammanskraal and Cullinan). (T-Net is a pseudonym. I have used pseudonyms whenever the identities of individuals or organisations are at stake). The care workers and their organisations were based in poor and low to middle class communities in the townships and informal settlements around Pretoria. As these organisations were mostly small and developing and no fees were charged by T-Net for its services. Instead, the Gauteng HIV/AIDS Directorate provided T-Net funding to sponsor a manager�s salary, and the training sessions on home-based care, peer counselling and mentoring. The organisation impressed me with their networking approach to achieving their objectives. It had one manager (and a committee) who contracted independent professionals to carry out their training tasks. I understood that debriefing in the context of home based care and HIV/AIDS counselling entailed the aim to provide counsellors and care workers an opportunity to talk about their frustrations and traumatic experiences, ventilate emotions, and to consolidate these into an appreciative understanding. I also wanted to introduce a further aim, which was to prepare each care worker to reflect on his or her helping practices, to share their reflections with others and through collaborative reflection to generate some ideas on how to deal creatively with their problems and resources. I was hoping to engage my participants in a process of self-reflection and experiential learning, assuming a developmental orientation. The manager of T-Net and I started off with a meeting which all the care workers from the different client organisations attended, to discuss the need that was expressed for debriefing as well as the practicalities thereof. During this meeting, the care workers impressed me with their noble intentions and enthusiasm about home-based care work. I was impressed with their dedication to serve patients at home in return for nothing at all. Many of them expressed how their voluntary community work had given them a sense of meaning and purpose, because they were unemployed and feeling useless. Some of them just recently learned that they are HIV-positive. On exploring the need for debriefing, I found only a few care workers who felt traumatised by the way someone died. Most of the care workers� need for debriefing, centred on feelings of powerlessness and a lack of care worker support. "The policy of Department of Health is that we care and support the people at home as hospitals are full with few available beds. Many home care workers were mobilised by nurses and work hand-in-hand with them to help take care of patients at home and distribute their tablets. Hospitals are full and we have to care and support people at home. We are committed to do our work in the community voluntarily and the people we serve have no food. However, when we visit the homes of our patients, we are faced with no travelling allowance and no material support to assist our duties or the needs of our patients, such as dealing with the lack of ambulance services. Further, clinics and hospitals have become short staffed and many nurses have left the country. Care givers are thus expected to do more - filling in for the nurse." We all agreed that there was an urgent need for the debriefing sessions. I introduced them to action learning and collaborative action research. I requested them to each keep a personal diary in which they would describe problematic events and reflect on how they managed them. They were to share their notes in small group context and talk about their problem solving ideas. Where possible, each group would comprise of members from different organisations. The idea was that care workers would have the opportunity to exchange ideas with care workers elsewhere. Hopefully, from such a broader sharing of ideas new insights would also be generated. Subsequent to the first meeting, four groups of approximately 8 care workers per group engaged bi-monthly in debriefing sessions. The idea was that another round of four groups would follow thereafter, and so on for others. Participants were encouraged to keep personal diaries in their vernacular and translations were done during group sessions. During group discussions I aimed at attending to their personal style and organisational resources that related to their problem solving. The care workers were also encouraged to identify common themes and share creative ideas on ways to manage problems. The care workers� responses to my requests were surprisingly positive. Most of them impressed me with how dedicated they were at keeping their diaries and case notes. Keeping a diary made sense to them. As one care worker had put it: "Keeping a diary works well for problems solving, because you have to pause a bit and reflect on what you do from a distance. This gives you a chance to think critically about what you are going to do next, and not just going ahead and becoming overwhelmed by what happens". The care workers also seemed to enjoy opening up and comparing their experiences with care workers from other communities. The manager of T-Net had planned four sessions for the first four groups over a period of two months. However, the sessions were stopped halfway through, after they had engaged in two or three sessions, because T-Net�s governmental funding was stopped. The T-Net manager informed me: "government decided to stop funding small organisations". The funding policy of government had apparently shifted to the channelling of grants to organisations that have the capacity to manage large amounts of funds. This raised concern for the livelihood of small and developing organisations and the effectiveness of channelling their funding under the auspices of bigger organisations and consortia. Another concern was that a once-off seed fund for small, and developing Non-Profit Organisations (NPOs) were problematic for their survival. Social policymaking that showed concern for HIV/AIDS community workers and their developing organisations seemed critical. I responded by calling all participants together in a final session. Through group work, we identified common themes and stories from their diaries, my notes from sessions and our group discussion. Hence, participants and I pulled together their common themes and frustrations into a collective feedback report to the Gauteng AIDS Directorate of the Department of Health. The specific aims of this report were to: "(a) give voice to the problems that HIV/AIDS community workers and their organisations experience in the course of their community services; (b) promote an appreciation of the valuable social capital that South Africa enjoys in the field of HIV/AIDS community-based health and welfare services, by community workers in co-operation with government; and (c) give information that was pertinent to policy making and funding arrangements of government". We also requested a response from the HIV/AIDS Directorate on our report, and about policy and funding plans concerning HIV/AIDS workers and their organisations. What follows are extracts from our report, including my notes and diary inputs from the care workers. The report dealt with the home-based care workers� resources, motivation, experiences and problems, and common themes pertinent to voluntary care worker policy and funding. The care workers and their managing committees gave their permission that their inputs are included in reports to government, professionals and the public. *Organisational Resources and Social Capital* "EACH in Eersterust was started 10 years ago by clinic sisters and community members. We did a research and identified cancer and psychiatric patients as in need. We started support groups with the clients and families. Spare rooms at the clinic were given to the organisation cost free. Our activities were done with the assistance of the sister in charge at the clinic, nurses and the occupational therapist from the University of Pretoria. We have twelve volunteers. We have different support groups from Monday to Thursday for patients with stroke, disabilities, arthritis, cancer, HIV/AIDS and psychiatry. In the afternoon after each group, the sister goes out with the volunteers to visit the sick. We started home-based care funded by the Department of Health in 2000. We have five home caregivers who were trained. They serve patients with stroke, TB, cancer, diabetes, mental health and AIDS. When their patients die, they prepare the family and assist them through the process. We are in the process of erecting a Hospice Respite Centre, co-funded by the Japanese Embassy. We do fund rising three times a year for different projects". "Kopano ke Maatla (Atteridgeville) was started in 1999. We are 35 caregivers. We do home based care for patients with stroke HIV/AIDS and are Dots supporters for TB patients. We see 3 to 5 patients each per week, and do visits three to four times per week. We support 6-10 TB patients per day. We do it because we have something to do, can share with them and care for them". "The Institute for Primary Health (Soshanguve) was established in 1994. The organisation is registered under section 21 and the NPO Welfare act. They have four full time staff, 10 full time volunteers who receive R 500 per month incentive from the Department of Health. There is a further 20 volunteer support group. The organisation also has a management committee and a board of directors. Activities include home based care, school talks, counselling, radio talk shows, church outreach and a youth programme". "Thembelisha (Mamelodi) has 20 caregivers. Church members of the Apostic Faith Mission started this project in February 2000. Their aim is to help people who are terminally ill and who are living alone and dying with no one to look after. As a church organisation a lot of people bring problems at church and we realised that there is a need to help the community, which is suffering from HIV/AIDS and related diseases. Initially, we did not have anything, e.g. medicine, gloves and money for transport to go door-to-door visiting our patients. The church now gives us Sunday offerings to help for transport. We are operating in Stanza Bopape and around Nellmapius. We are being helped by our local clinics in Stanza I and II. It is our spirituality that makes us keep on going - we do it for the love and moral support we can give others". Volunteer workers do not have full time employment and are often not employed at all. Some of them sell fat cakes, do food gardens, work at cash loans, make beads, depend on their husbands or parents, do piece jobs or knit jerseys. Many volunteers were recruited by retired sisters or sisters at clinics from the Department of Health. Some initiated their organisations from their churches, and belong to burial societies or church groups. "Thusong Health Project in Pretoria offers services to sex workers. Some sex workers want to change their job. We are now working on establishing a job creation project for them, starting with dressmaking". *Having to cater for all needs of the patient and family* �The problem is that your patients become fully dependent on you. On your visit you find that they do not have food, and they can�t take the medication you bring them without food. Even when their condition is such that they need to see a doctor, their family has no money for transport. They live in conditions where there is no piped water, and you have to carry many buckets of water into their room so that you can wash them. You also leave sufficient buckets of water in their room so that a family member can wash them for the two days that you will not be visiting. On the third day you however find that no-one washed the patient." "Although you have explained to your patient and the family about how home based care work, they are waiting for you as their saviour. You wonder now, how should you influence the family?" "Most of us have five patients whom we visit three times during the week. The family however calls us over weekends to attend to a crisis and to do the patients� dressing". "One of my patients once asked me for money to buy some fruit on his way to the hospital but I refused. Thereafter I felt so guilty that I bought a bag of oranges and sent it after him to hospital". "It is difficult to decide when to give and when not and dealing with your guilt. There is this bible story about the women who refused to help this stranger who asked for help, because she was waiting for Jesus to come to her door. But thereafter she found that the stranger whom she rejected was Jesus". "There was this one patient of ours who lay dead in her bed for three days, her baby still sucking and the husband was just sitting there drinking. This made me feel disturbed". "Another patient�s bedsores were that septic that the room had a smell. When I went to see my doctor, I cried and wanted him to wash the smell from my face". "The husband says �you stole my wife� when you refer her to a hospice. The husband is not dealing with the illness." "Our patients are the poorest of the poor, they give use many complaints and always wants something to eat. With no support from elsewhere, it now looks like it is your burden. The Health Department should support home caregivers and not leave them empty-handed. They should give us food parcels to hand out". "Hospitals dump dying patients on you and the care giver is being accused when the patient is worse. Caregivers get burnout and frustrations because families are not helpful and start to blame care givers if something happen to their sick person. They load all their problems on the caregiver especially after the death of the patient". "At times when I find my patient being angry and the family is also angry with him, I feel trapped between them not knowing what to do - how do I create a peaceful environment, how do I deal with powerlessness and anger?" "The patients that are referred to us are critical. Often their families abandon them and the hospital does not treat them - they are now dependant on the home care giver." "We have problems that we don�t know how to solve, like transport for patients and money for it. We go from pillar to post to get someone to offer a car, an ambulance and a donation to pay for the petrol. We are too few - we cannot reach everyone. If policy makers could see how organisations are struggling, do a research of organisations. People down here, their organisations have nothing. People up there should see and touch links down here. We should get a push, moral support. It is dark down here - someone should give light. We need support, even our youth". *The disabled* "Many of the families that we care for have problems with disabled members at home. For example, this one granny is taking care of her daughter�s child who is mentally disabled. She cannot send him to special school because she says she has no money for school fees. She says the Social welfare cannot help her, and she cannot remember with whom she talked. When I asked her out about her problem to get the child�s disability fund, it came out that the child does not have a birth certificate, and the mother in Johannesburg does not cooperate, and the social worker here does not do home visits." "There are no wheel chairs for people with stroke". *Dealing with denial* "People move around, especially after they had tested HIV positive. They cannot face their families and their friends reject them". "There is this one youth that just sits with his head in his hands. When I try and talk to him he chases me away". "My one client is HIV positive, but she does not tell her husband". "This year I buried four girls from one boyfriend. It is difficult to deal with denial, one way that works is to just keep on giving information and to make sure that people know where to get help and support". *Recognition and support from nurses, doctors and social workers - some successes and some let downs* "We as care givers, are committed to do our work in the community voluntarily and the people we serve have no food. The policy of DOH is that we care and support the people at home as hospitals are full with few available beds. However, when we visit the homes of our patients, we are faced with no travelling allowance and no material support to assist our duties or the needs of our patients". "Nurses ignore us when we want to assist them. Some even use abusive language that makes us angry. We even feel like giving up because we are not getting any incentives for doing the work we are doing voluntarily". "Some doctors are supportive and even treat our patients for free as long as the caregiver is present". "Social workers are problematic - they always have an excuse that they have no transport to visit patients. So the caregivers are pressurised to do something for the patients and have to pressurise social workers to do something". "Our caregivers always ask about vacant houses that could be used for home care or hospice. With their efforts we will in future run our own hospice in Soshanguve. Already, Legae Clinic donated 20 beds and a 13-roomed house has been given to us. We are just waiting for the finalisation of papers". "Our caregivers care for all patients with all their sicknesses at home. They thus underwent a three-day DOTS workshop at Tlamelong Clinic. 20 caregivers in 2 groups attended the workshop. No transport funds were provided. They were however grateful of the training opportunity provided to them". "We believe that networking and partnership with all stakeholders are important. So caregivers are taking initiative to introduce themselves so as to get moral support and donations, to be able to help those in need." "Another problem with social workers is that they are absent in new settlement areas - they quit to work in the city". "A big problem is that in some of our areas the social workers and clinic sisters do not recognise our counsellors, even though they received training through T-Net. The Department of Health should introduce them to the clinics". *Hospices, orphanages and child headed families* "There are few hospices and many orphans are left to fend for themselves and turn to the street". "One AIDS patient died and lefts four kids, who were taken to their uncle. The second-born did not get along with him and stayed at the shack. She got raped, but runs away when I approach her". "Some children are left alone, no one to support them with food and everything they want. Children no longer go to school. Some orphans do not have birth certificates and if we want to help them to get some grants this becomes a problem. There is also a problem for those who are from 7 years and up - they are not allowed to get any grant". *Voluntarism and incentives* "Some of us get incentives such as a transport allowance, R 500 for voluntary work and a diploma in Home Based Care and peer counselling." *Co-optation of People Living With AIDS who serve as care givers and HIV/AIDS counsellors* "We, as the Success Support Group don�t have the resources to take care of our family and taking care of our People With AIDS (PWAs). Our group does counselling and awareness raising, home and hospital visits and exhibitions. And the most important thing is SUPPORT - PWAs need moral support. As the Success Support Group, we have a big big problem about people wanting to make money through us PWAs. For instance, an individual started a project for PWAs through F-Company, S and Child Welfare. While he was looking forward to satisfy his needs and to use PWAs, we gained nothing even though we were bribed by his offer to give our children money for school and pre-school. Many people advised us that we must be careful of him and that he was no longer working at S but still used the name of F-Company. Another example is M-Hospice who gets food donations from W for PWAs while PWAs get nothing. The Success Group is trained to do counselling but while M-Training do accommodate us with office space, they do not provide for the use of other facilities such as telephone and fax. Worst of all, they ignore us and invite people from outside to do counselling. The other problem is when there is an AIDS awareness event, we volunteer to help them but at the end of the day we are nothing because they don�t even give mention of our names or recognise our group. M-H gain funding from our AIDS status - this, they do by expecting us to disclose our status at short notice to visitors for R 50, we however feel depressed and used thereafter." *Common themes pertinent to voluntary care work policy and funding* The care workers and I highlighted the following themes from their diaries and our collective discussion: Caregivers cater for all needs of the patient and family - social welfare, economic, physical and psychological health Their services are dependent on good linking and co-operation with doctors, sisters, nurses, social workers, psychologists and their organisations Voluntarism requires incentives and material support Care givers do an excellent job in taking care of their patients and providing information to family members to assist them to deal with diseases Hospices and orphanages are lacking and are being developed through government-community organisation The disabled and resources for them require urgent attention Care givers, the role of the community and their organisational structures (eg church groups), are not always given the recognition they deserve, and are often abused and co-opted for the selfish needs of the health professional and the NGO sector Developing organisations, often lacking in resources and ability to secure funding, are not necessarily unskilled or ineffective in the services that they offer to the public. My subsequent progress I thought that an approach of information exchange would facilitate a response from government, only to find that our government contact persons claimed that they had not received our report. Subsequently, the manager of T-Net arranged a meeting with a managing departmental official, and invited some care workers and me to attend. At this meeting I was surprised to learn that it was T-Net�s sponsorship that was stopped, and not all small organisations as I were made to (or had chosen) to believe. The government official, with whom we had a meeting, also informed us that the department never requested "debriefing sessions" for care workers. She however thought that government workers should first be engaged in action learning. She also warned that we were consulting "the wrong officials", and that T-Net should never have received funding because their proposal was weak. I could not help feeling somewhat mislead and paranoid about the situation. What happened seemed to me a repetition of my own story that I tended to be eager to help others, only to let myself to be abused by individuals or the system. Did I get the story wrong from the manager of T-Net? Was the department "full of politics"? I subsequently consoled myself by letting go of worrying about the whole incident - not to become trapped in a power play with others. No one in a development context wants to be told what to do and how to behave. Perhaps, it would help others and myself if I would stay focused on free information exchange. Subsequently, from a meeting with health professions by the AIDS directorate about their HIV/AIDS care programme, it did appear that some of the issues that were raised by our report were receiving attention. My participants and I had voiced our concerns about home-based care and perhaps we were being heard. On a follow-up, some of the home-based care NPOs also informed me that they had started regular meetings where their care workers share and reflect on their work experiences. However, others maintained that they missed that networking they had with care workers from other organisations and wished for a more collaborative form of debriefing. What does my results mean in theory? The virtual conference page on "Something for Nothing" encouraged me to wonder about the costs and gains of voluntary work for each participant involved - the client of the home-based care worker, the volunteer, the NGO management, government, professionals � Are we building a "predatory [health care] culture" of "stalkers and victims"? (McLaren, 1995, as cited in Critical Methods Webpage). (I have placed my additions to quoted texts in brackets). What kind of traps do we set? I agree with Kevin William, who had posted a comment on my abstract, that one should be wary of just blaming "the government". None of us really want to be obstructionist. A blaming approach would also further a power struggle, holding in place behaviours and relationships that were problematic in the first place. We would thus maintain "human development [as] � a unique set of tactics through which power proliferates and extends itself beyond the range of other development strategies" (Vaughan M Dutton, Subjects of Development, virtual Critical Methods Conference). As DJ had highlighted: "Perhaps we are all predators [and victims] - academics, home workers, nurses, dr's, politicians?". The problem of power, voice and the co-option of community members by those dominant for their egotistic needs have been major concerns for participatory researchers in the development context (Hall, 1992). Many discussions on civil society focus on different kind of institutions or associations, their behaviour and the relations between them. Questions have been raised about how the policies of government and international aid policies affect the health care system and the work done by volunteers and community health activists in developing countries. Relatively little attention is however given to the question what actually motivates people to found certain institutions or to get involved in them, e.g. to become an �activist� (Buijs, 2002) or a voluntary care worker. From a constructivist perspective, each community care practitioner has a unique tendency to act (and be trapped) in a certain way. Our tendencies are closely related to the assumptions and myths that we hold about the world and how we should operate upon it. Analysing the care workers� frustration and their diary entries, they appeared to gravitate toward the following tendencies and virtues: Filling in for � Catering for all needs Sympathy Guilt Powerlessness and anger In need of moral support Morality Perseverance Being abused Loving kindness I gather that many of the care workers, like me, tend to get trapped in the moral domain. Perhaps, in our eagerness to help others we compromise ourselves. Our uncritical support of the government�s new home-based care approach (an ideology) puts us at risk of becoming victims of the (our) approach. Thus, each participant, including governmental official, NPO manager, professional and volunteer care worker could find it useful to start with self (Pistorius, 2000) and to engage in critical reflection about his or her approach to home-based care work. Perhaps care workers (like me) should not be so eager to help others and health organisations and look critically at the approach they are supporting. To my understanding, health care professionals, together with the Department of Health, non-governmental organisations and churches in poor communities in South Africa had recently taken a community-based approach to HIV/AIDS care and prevention. This approach rests on the assumptions that: Terminally ill people can be treated in the community - at home or in a hospice - and by volunteer workers who are community members Ideally, people prefer to die at home or in their community, maintaining personal dignity and contact with loved ones Community members can be trained to deliver community education, peer counselling and home-based care The HIV/AIDS epidemic will be curbed through community members� active involvement in treatment and prevention efforts Community-base care, primary health care and prevention are programmes that many of us fought for as part of our struggle for an equitable and community participatory health care system during the 1980s. Hence, it is understandable that we should rejoice that government together with community and professional players would embrace this approach. However, from my debriefing experience it is clear that home-base care not only poses gains, but also some serious emotional and financial costs. One would suppose that these costs were unexpected and that voluntary care workers engage and persevere in their work because they believe that home-based care could help them achieve the democratic health care system we all had in mind? What are the dynamics around voluntarism and home-based care in poor and developing communities? I found a fair amount of literature on voluntarism as a positive institution in society and how to be a good leader of voluntary workers (Cf. Voluntas. International Journal of Voluntary and Nonprofit Organizations; Nonprofit and Voluntary Sector Quarterly; and, Internet Nonprofit Center). There is a growing recognition of the importance of social capital in maintaining a healthy and vibrant civil society. Volunteering is viewed as a core component of social capital (Onyx & Leonard, 2002). In terms of my search, volunteer workers should benefit from an appreciative inquiry and the building of organisational skills. Perhaps my home-based care worker organisations and government are disorganised. I could however not find any reports on home-based care for the terminally ill that shows that the writer attempted to: (a) reflect in public on the difficulties that voluntary AIDS care workers experience, and (b) search for ways to deal with the challenges that care workers are faced with, e.g. care and support of the care worker. The few project reports that I had come across about this approach, were mostly presented in newspapers and newsletters. Some examples include: A report in the Sunday Times, August 25 2002, "They brought me back from death. Programme involved in row over UN funding takes the load off hospitals by treating HIV-positive people as outpatients" by Mawande Jubasi. During May 2002, Hospice Care Plus, Kentucky, received the innovation of the week, from The Peter F. Drucker Foundation for Nonprofit Management, for expanding hospice care to terminally ill patients who wish to remain at home while also offering individuals the opportunity to develop marketable skills (<http://drucker.org/innovation/innov-of-week/>). These care workers were paid by the family for their home care work, which included cleaning the patient�s room and doing house sitting. I also attended the African Conference on the Social Aspects of HIV/AIDS Research (SAHARA), organised by the Human Science Research Council, 1-4 September 2002 and was impressed that there were various presentations about home-based care projects (Cf. Modiba, 2002; Williams, 2002; Mundeta & Gomo, 2002;). These presentations however confirmed my concern that presenters mainly talked about their positive achievements. Only one presenter (Williams, 2002) highlighted that they were planning to study the impact that home-based care work has on youth care workers and that for their support they had tried to link youth care workers up with older care groups. The above-mentioned reports offered the following perceptions about the gains for different players from community and home-based care: Governmental clinics and hospitals can keep patient admissions down. The costs of health services and hospitalisations will be lowered. Community members who become volunteer workers gain skills and contacts that will make them employable. Volunteer workers are trained and recognised by reputable community and government organisations. Volunteer workers gain a sense of meaning and respect through their altruistic offering of community services. The terminally ill and their families can gain support for themselves and their family from volunteers whom they can respect and trust as of good reputation. HIV-positive people can secure support, for themselves and their family members, by offering their voluntary services to AIDS service organizations. Some of the SAHARA presentations had shed some light on my "debriefing experience". A presentation by Swartz (2002), on "The impact of local government HIV/AIDS programmes in South Africa", showed that home-based care projects are from amongst the most popular HIV/AIDS projects that community members embark on nowadays. Another enlightening presentation was by Mabetoa (2002), the HIV/AIDS director of the Department of Social Development, who gave a critical analysis on "The social impact of HIV/AIDS and the growing demand for social development services". She highlighted that although there was a growing demand for social development services at local community level, this were yet to be incorporated into HIV/AIDS programmes. HIV/AIDS programmes often focus on physical aspects, she said. The "Integrated Community Based Care and Support Model" is "an ideal situation and making it work has many challenges". Perhaps then, because it is a new approach, participants tend to emphasise positive gains, letting "negativities" remain in the background. What I had found helpful though, was to contrast how stories of home-based care work differed to my "debriefing experience". For example, the Red Cross in Southern Africa (Mundeta, 2002) had strong organisational resources - such as being international and successful in terms of funding - and had provided incentives and recognition for volunteers. These incentives include, an allowance, a bicycle, a uniform, food parcels for the volunteer as well as for patients, support groups, and networking conferences for volunteers. Furthermore, Vicky Timm, who made a presentation on "Being a hospice worker: Jay�s story", at the Critical Methods Conference, showed that her hospice worker was basically happy. His story contrasted with my care worker experiences - Jay�s hospice organisation had provided him an allowance, had support groups for care workers, and Jay did not have to grapple with challenges such as not having access to piped water, electricity, ambulances, social workers, medical services, being unemployed, etc. It is tough to work in a poor community. I urge anyone to try to do in a poor community what they are doing successfully in an affluent community. Health care is more expensive in poor communities; it is more expensive to maintain your health when you have no access to water and electricity. From my "debriefing experience, it seems that government and NGO health care organisations tighten their belts, and the volunteer workers pay the costs. Is that fair? Is that sustainable? As one Critical Methods Conference participant pointed out, their volunteer organisation collapsed because members were expected to use and offer their own resources to carry organisational activities. This confirm my suspicion that volunteers tend to be eager to help others, and support popular ideas, only to be abused by dominant individuals or the system. Unemployed voluntary care workers seem particularly at risk of being subjugated to the dominant ideas and perceptions that their programme planners hold. Thus, structural inequalities in their community and workplace are being maintained under the ideological banner of "community-based health care" and "democracy". Care workers may thus (tend to) become the victims of, and fall prey to, the community-based care programmes that are instituted by those in power. To turn an oppressive system around, care workers should be assisted to have "the knowledge, skills, values and attitudes to question, understand, interrogate and eventually act as change agents of structural inequalities in their place of employment" (Giroux, 1988, as cited on Critical Methods web page). Government officials, professionals and NGO managers should question whether their application of a new approach to things do not maintain the status quo (i.e. inequality), and do not make matters worse for others. It could also be helpful to reflect critically: Why do we expect home-based care work to be voluntary? Does voluntary work mean "no pay", or, a "not-for-profit" payment? Why is it that most home-based care workers are female? Do we expect from them to clean people�s rooms and to clean their wounds for free, because they are women? HIV/AIDS programme planners should thus take care of the values and psychosocial aspects underlying their approach and include care of the care worker into their budgets. What should be done? How should participants of home-base care take care of their approach and care of care workers? It could be helpful if all of role players engage in a process of critical self-reflection and share their reflections collectively. By starting with self, participants take cognisance of their personal tendencies and how this may interfere with their progress. Such a process may make it less likely that participants engage in blaming or defensive interaction, perpetuating a struggle approach to life. A sharing of reflections, including our stories of experiential learning and trial and error, are bound to lead to positive responses from others. Take for example the food parcels that home-based care workers can get for their clients from the Department of Welfare nowadays. One of the aspects of the debriefing sessions that the care workers valued most was that they could share their experiences and self-reflections with people outside their usual circle of contacts. My reflections were furthermore aided when I could share, and contrast, my experience with others elsewhere and during the Critical Methods Conference. It is through noticing how our experiences and contexts differ, that I can see a bigger picture. For now, I believe that we can create knowledge both individually and collectively through an appreciation of difference in Bateson�s sense - knowledge is information that makes a difference (Cf. Bateson, 1972, 1979). Cherishing one�s own and other people�s information (their difference and creativity), may offer an alternative and also more resourceful and socially responsible way of dealing with home-based care. References Bateson, G. (1972). Steps to an ecology of mind. New York: Jason Aronson. Bateson, G. (1979). Mind and nature. New York: Dutton. Buijs, G.J. (2002, July). Sources of Inspiration: Toward a Comparative Perspective on Why People Get Involved in the Third Sector. Paper presented at the International Society for Third-sector Research Fifth International Conference, Transforming Civil Society, Citizenship and Governance: The Third Sector in an Era of Global (Dis)order, Cape Town, South Africa. DJ, (2002, September). Comments on abstract. Voluntary HIV/AIDS home-based care work traps = a predatory health care system? Presented on 8th^{Qualitative virtual Critical Methods Conference, Something for Nothing: Subjectivity and society in the New Economy, Centre for Applied Psychology, University of South Africa, Pretoria.} Dutton, V. M. (2002, September). Subjects of Development. Abstract presented on 8th Qualitative virtual Critical Methods Conference, Something for Nothing: Subjectivity and society in the New Economy, Centre for Applied Psychology, University of South Africa, Pretoria. Giroux, H. (1988). The transformative intellectual. Cited on the 8th Qualitative virtual Critical Methods Conference, Something for Nothing: Subjectivity and society in the New Economy, Centre for Applied Psychology, University of South Africa, Pretoria. Hall, B.L. (1992). From margins to center? The development and purpose of participatory research. American Sociologist, 23(4), 15-28. Hospice Care Plus (2002, May). The Companion Program. Cited on The Peter F. Drucker Foundation for Nonprofit Management, Drucker Nonprofit Innovation Discovery Site, <http://drucker.org/innovation/innov-of-week/> and http://pfdf.org/innovation/innovation/innovation.asp?innov-id=159. Internet Nonprofit Center, Infromation for and about nonprofits, http://www.nonprofits.org/ William, K. (2002, September). Comments on abstract. Voluntary HIV/AIDS home-based care work traps = a predatory health care system? Presented on 8th Qualitative virtual Critical Methods Conference, Something for Nothing: Subjectivity and society in the New Economy, Centre for Applied Psychology, University of South Africa, Pretoria. Mabetoa, M. (2002, September). The social impact of HIV/AIDS and the growing demand for social development services. Paper presented at the African Conference on the Social Aspects of HIV/AIDS Research (SAHARA), Human Science Research Council, Pretoria. Jubasi, M. (2002, August 25) They brought me back from death. Programme involved in row over UN funding takes the load off hospitals by treating HIV-positive people as outpatients. Report in Sunday Times, p.13, South Africa. McLaren, P. (1995). Cultural Pedagogy and Predatory Culture. Book cited on the 8th Qualitative virtual Critical Methods Conference, Something for Nothing: Subjectivity and society in the New Economy, Centre for Applied Psychology, University of South Africa, Pretoria. Modiba, P. (2002, September). The integration of HIV/AIDS Care and Support into primary health care in Gauteng Province (South Africa). Paper presented at the African Conference on the Social Aspects of HIV/AIDS Research (SAHARA), Human Science Research Council, Pretoria. Mundeta, B. & Gomo, E. (2002, September). Red Cross Societies and HIV/AIDS: Southern African experiences and plans in prevention and care. Paper presented at the African Conference on the Social Aspects of HIV/AIDS Research (SAHARA), Human Science Research Council, Pretoria. Nonprofit and Voluntary Sector Quarterly, Sage Publications, Inc. Onyx, J. & Leonard, R. (2002, July). The relationship between formal and informal volunteering: A social capital framework. Paper presented at the International Society for Third-sector Research Fifth International Conference, Transforming Civil Society, Citizenship and Governance: The Third Sector in an Era of Global (Dis)order, Cape Town, South Africa. Pistorius, A.G. (2000). Participatory community development - a networking approach. Unpublished doctoral thesis, University of South Africa, Pretoria Swartz, L. (2002, September). The impact of local government HIV/AIDS programmes in South Africa. Paper presented at the African Conference on the Social Aspects of HIV/AIDS Research (SAHARA), Human Science Research Council, Pretoria. Timm, V. (2002, September). Being a hospice worker: Jay�s story. Paper presented on 8th Qualitative virtual Critical Methods Conference, Something for Nothing: Subjectivity and society in the New Economy, Centre for Applied Psychology, University of South Africa, Pretoria. Voluntas, International Journal of Voluntary and Nonprofit Organizations, http:// www. Istr.org/pubs/voluntas/ Williams, E. (2002, September). Increasing access to care and support for PLHA: Building the capacity of youth caregivers in rural Zambia. Paper presented at the African Conference on the Social Aspects of HIV/AIDS Research (SAHARA), Human Science Research Council, Pretoria.
	Peer reviews of this paper appear below.
	Review 1 Dear Annalie This is the first time that I engaged in a virutal review environment. Maybe my comments and suggestions are not applicable, but I would like to learn from you and the process. I read about three stories in your article. The first story is about the volunteers, the second about the process of involvement and the third story is your voice about your experiences as well as a reflection on the process. These three story lines are sometimes more visible than others. I would have appreciated a clearer description of your own story. In your abstract I wondered by whom the debriefing sessions were requested? What is the meaning of "a developmental orientation"? What was the "model for care worker self-development"? A richer dscirption of the contexts in which the care workers worked would have been helpful to understand the issues that they deal with. And I assume they were all women? Where they? Can I read "action learning" and "experiential learning" as describing the same concept? How did the group decide what topics to discuss? You said that the aim according to you was that they hand an opportunity to talk about their frustrations and traumatic experiences. I also saw something of a commitment and perseverance in the whole process. One of the issues that I also noted in the care workers verbal transcripts was guilt feelings. I wondered how that contributed to their involvement in the caring for others and how it played into the dynamics of exploitation. How were the themes determined that you discussed as commen themes pertinent to voluntary care work police and funding? And I was wondering about the emotional "cost" involved? Kind regards Vera Roos
	Review 2
	Author reply Dear Vera, Thank you for your helpful comments. I made some clarifying changes in the text. Kind regards Annalie

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Action learning and reflection with HIV/AIDS home-based care workers in Gauteng
8th Annual Qualitative/Critical Methods Conference - Critical Methods Society

Something for nothing

	Paper presented at the 8th Annual Qualitative Methods Conference: "Something for nothing" 1 May to 30 September 2002 (http://criticalmethods.org/p105.mv)
	Voluntary HIV/AIDS home-based care work traps = A predatory health care system? Annalie G. Pistorius Contact e-mail: [email protected] Affiliation: Department of Psychology, Medical University of Southern Africa
	Last year, I had engaged voluntary home-based care workers and HIV/AIDS peer counsellors in small group discussions, using action learning and encouraging each to keep a personal journal on their care work experiences. The need for the "debriefing of traumatised" home-based care workers was identified by a peer support training organisation together with a managing governmental official, HIV/AIDS counsellors, home-based care workers and their community organisations in Tshwane, South Africa. When the government official requested me to do "debriefing sessions" with the home-based care workers, and offered payment thereof, I was impressed about their serious attending to the care worker�s personal and community development challenges. At commencement of the sessions, I was also moved with the great number of volunteers, many but not all of them HIV-positive, mostly women, many mobilised by members of the health department and community groups in support of people living with HIV/AIDS and dying at home. I thought: "something positive is happening - community organisations are being sponsored to train community volunteers in peer counselling and home-based care". The voluntary workers opened up very easily and offered many personal stories about their home-based care experiences that made them feel traumatised and powerless. I was hoping to assume a developmental orientation, promoting more than mere crisis intervention. I managed to give the counsellors and care workers an opportunity to reflect on and share experiences related to an appreciation of their services, eg what motivated them to do this kind of work, their personal tendencies and how they dealt creatively with problems. They also voiced common dilemmas pertinent to policy-making and funding. Common themes included: being in the front line and having to deal with all the needs of the patient/client; the lack of multi-sectoral and inter-departmental co-operation; voluntarism requires incentives and material support; and, care givers are not always given the recognition they deserve, yet they are being co-opted for the selfish needs of the health sector. We also explored a model for care worker self-development, which entailed balancing power and control issues with facilitating information flow and creativity. My sessions were however stopped halfway through by the manager of the organisation that had arranged them. He informed me: "government decided to stop funding of small organisations". I responded by calling all participants together into a final session, pulling together their common themes and frustrations into a collective feedback report to the AIDS directorate of government. I thought that a shift to facilitating information flow would render a response, only to find that our government contact persons claimed that they had not received our report. Moreover, I was informed that it was the said organising NGO who's sponsorship was stopped, that government never requested "debriefing sessions", that we should not consult "the wrong officials", etc. I could not help feeling somewhat mislead and paranoid. What happened seemed to me a repetition of my story that I tended to be eager to help others, only to be abused by individuals or the system. The virtual conference page on "Something for Nothing" also encourage me now to wonder about the costs and gains of voluntary work for each participant involved - the client of the home-based care worker, the volunteer, the NGO management, government, professionals � Are we building a "predatory (health care) culture" of "stalkers and victims"? (McLaren, 1995). What kind of traps do we set?
	Introduction In this paper I present the experience I had with the debriefing of voluntary home-based care workers and HIV/AIDS peer counsellors in and around Tshwane (Pretoria) during 2001. I reflect on what proceeded when the sessions were stopped by the managing organisation when their governmental funding ended. I include extracts from the diary entries and inputs that the care workers had offered me concerning their experiences of home-based care, which we provided in a feedback report to the Gauteng HIV/AIDS Directorate of the Department of Health. I theorise on how different players (like me) might tend to be eager to help others while being uncritical of how our support of a new approach may make matters worse. I also include the responses I gained from others and during the Critical Methods Conference, searching for ways on how to turn the problem around. I finally offer some ideas on how participants of the home-based care approach could take care of themselves and care workers. Debriefing voluntary home-based care workers Last year, I had engaged voluntary home-based care workers and HIV/AIDS peer counsellors in small group discussions, using action learning and encouraging each to keep a personal journal on their care work experiences. The need for the "debriefing of traumatised" home-based care workers was identified by a peer support training organisation together with a managing governmental official, HIV/AIDS counsellors, home-based care workers and their community organisations in Tshwane, South Africa. When the government official requested me to do "debriefing sessions" with the home-based care workers, and offered payment thereof, I was impressed about their serious attending to the care worker�s personal and community development challenges. At commencement of the sessions, I was also moved with the great number of volunteers, many but not all of them HIV-positive, mostly women, many mobilised by members of the health department and community groups in support of people living with HIV/AIDS and dying at home. I thought: "something positive is happening - community organisations are being sponsored to train community volunteers in peer counselling and home-based care". The request for the "debriefing sessions" and offers of payment thereof also indicated their serious attending to the care worker�s personal and community development challenges. The training organisation (whom I will refer to as the Training Network, T-Net) served 18 CBOs in and around Thswane in Gauteng (including Hammanskraal and Cullinan). (T-Net is a pseudonym. I have used pseudonyms whenever the identities of individuals or organisations are at stake). The care workers and their organisations were based in poor and low to middle class communities in the townships and informal settlements around Pretoria. As these organisations were mostly small and developing and no fees were charged by T-Net for its services. Instead, the Gauteng HIV/AIDS Directorate provided T-Net funding to sponsor a manager�s salary, and the training sessions on home-based care, peer counselling and mentoring. The organisation impressed me with their networking approach to achieving their objectives. It had one manager (and a committee) who contracted independent professionals to carry out their training tasks. I understood that debriefing in the context of home based care and HIV/AIDS counselling entailed the aim to provide counsellors and care workers an opportunity to talk about their frustrations and traumatic experiences, ventilate emotions, and to consolidate these into an appreciative understanding. I also wanted to introduce a further aim, which was to prepare each care worker to reflect on his or her helping practices, to share their reflections with others and through collaborative reflection to generate some ideas on how to deal creatively with their problems and resources. I was hoping to engage my participants in a process of self-reflection and experiential learning, assuming a developmental orientation. The manager of T-Net and I started off with a meeting which all the care workers from the different client organisations attended, to discuss the need that was expressed for debriefing as well as the practicalities thereof. During this meeting, the care workers impressed me with their noble intentions and enthusiasm about home-based care work. I was impressed with their dedication to serve patients at home in return for nothing at all. Many of them expressed how their voluntary community work had given them a sense of meaning and purpose, because they were unemployed and feeling useless. Some of them just recently learned that they are HIV-positive. On exploring the need for debriefing, I found only a few care workers who felt traumatised by the way someone died. Most of the care workers� need for debriefing, centred on feelings of powerlessness and a lack of care worker support. "The policy of Department of Health is that we care and support the people at home as hospitals are full with few available beds. Many home care workers were mobilised by nurses and work hand-in-hand with them to help take care of patients at home and distribute their tablets. Hospitals are full and we have to care and support people at home. We are committed to do our work in the community voluntarily and the people we serve have no food. However, when we visit the homes of our patients, we are faced with no travelling allowance and no material support to assist our duties or the needs of our patients, such as dealing with the lack of ambulance services. Further, clinics and hospitals have become short staffed and many nurses have left the country. Care givers are thus expected to do more - filling in for the nurse." We all agreed that there was an urgent need for the debriefing sessions. I introduced them to action learning and collaborative action research. I requested them to each keep a personal diary in which they would describe problematic events and reflect on how they managed them. They were to share their notes in small group context and talk about their problem solving ideas. Where possible, each group would comprise of members from different organisations. The idea was that care workers would have the opportunity to exchange ideas with care workers elsewhere. Hopefully, from such a broader sharing of ideas new insights would also be generated. Subsequent to the first meeting, four groups of approximately 8 care workers per group engaged bi-monthly in debriefing sessions. The idea was that another round of four groups would follow thereafter, and so on for others. Participants were encouraged to keep personal diaries in their vernacular and translations were done during group sessions. During group discussions I aimed at attending to their personal style and organisational resources that related to their problem solving. The care workers were also encouraged to identify common themes and share creative ideas on ways to manage problems. The care workers� responses to my requests were surprisingly positive. Most of them impressed me with how dedicated they were at keeping their diaries and case notes. Keeping a diary made sense to them. As one care worker had put it: "Keeping a diary works well for problems solving, because you have to pause a bit and reflect on what you do from a distance. This gives you a chance to think critically about what you are going to do next, and not just going ahead and becoming overwhelmed by what happens". The care workers also seemed to enjoy opening up and comparing their experiences with care workers from other communities. The manager of T-Net had planned four sessions for the first four groups over a period of two months. However, the sessions were stopped halfway through, after they had engaged in two or three sessions, because T-Net�s governmental funding was stopped. The T-Net manager informed me: "government decided to stop funding small organisations". The funding policy of government had apparently shifted to the channelling of grants to organisations that have the capacity to manage large amounts of funds. This raised concern for the livelihood of small and developing organisations and the effectiveness of channelling their funding under the auspices of bigger organisations and consortia. Another concern was that a once-off seed fund for small, and developing Non-Profit Organisations (NPOs) were problematic for their survival. Social policymaking that showed concern for HIV/AIDS community workers and their developing organisations seemed critical. I responded by calling all participants together in a final session. Through group work, we identified common themes and stories from their diaries, my notes from sessions and our group discussion. Hence, participants and I pulled together their common themes and frustrations into a collective feedback report to the Gauteng AIDS Directorate of the Department of Health. The specific aims of this report were to: "(a) give voice to the problems that HIV/AIDS community workers and their organisations experience in the course of their community services; (b) promote an appreciation of the valuable social capital that South Africa enjoys in the field of HIV/AIDS community-based health and welfare services, by community workers in co-operation with government; and (c) give information that was pertinent to policy making and funding arrangements of government". We also requested a response from the HIV/AIDS Directorate on our report, and about policy and funding plans concerning HIV/AIDS workers and their organisations. What follows are extracts from our report, including my notes and diary inputs from the care workers. The report dealt with the home-based care workers� resources, motivation, experiences and problems, and common themes pertinent to voluntary care worker policy and funding. The care workers and their managing committees gave their permission that their inputs are included in reports to government, professionals and the public. *Organisational Resources and Social Capital* "EACH in Eersterust was started 10 years ago by clinic sisters and community members. We did a research and identified cancer and psychiatric patients as in need. We started support groups with the clients and families. Spare rooms at the clinic were given to the organisation cost free. Our activities were done with the assistance of the sister in charge at the clinic, nurses and the occupational therapist from the University of Pretoria. We have twelve volunteers. We have different support groups from Monday to Thursday for patients with stroke, disabilities, arthritis, cancer, HIV/AIDS and psychiatry. In the afternoon after each group, the sister goes out with the volunteers to visit the sick. We started home-based care funded by the Department of Health in 2000. We have five home caregivers who were trained. They serve patients with stroke, TB, cancer, diabetes, mental health and AIDS. When their patients die, they prepare the family and assist them through the process. We are in the process of erecting a Hospice Respite Centre, co-funded by the Japanese Embassy. We do fund rising three times a year for different projects". "Kopano ke Maatla (Atteridgeville) was started in 1999. We are 35 caregivers. We do home based care for patients with stroke HIV/AIDS and are Dots supporters for TB patients. We see 3 to 5 patients each per week, and do visits three to four times per week. We support 6-10 TB patients per day. We do it because we have something to do, can share with them and care for them". "The Institute for Primary Health (Soshanguve) was established in 1994. The organisation is registered under section 21 and the NPO Welfare act. They have four full time staff, 10 full time volunteers who receive R 500 per month incentive from the Department of Health. There is a further 20 volunteer support group. The organisation also has a management committee and a board of directors. Activities include home based care, school talks, counselling, radio talk shows, church outreach and a youth programme". "Thembelisha (Mamelodi) has 20 caregivers. Church members of the Apostic Faith Mission started this project in February 2000. Their aim is to help people who are terminally ill and who are living alone and dying with no one to look after. As a church organisation a lot of people bring problems at church and we realised that there is a need to help the community, which is suffering from HIV/AIDS and related diseases. Initially, we did not have anything, e.g. medicine, gloves and money for transport to go door-to-door visiting our patients. The church now gives us Sunday offerings to help for transport. We are operating in Stanza Bopape and around Nellmapius. We are being helped by our local clinics in Stanza I and II. It is our spirituality that makes us keep on going - we do it for the love and moral support we can give others". Volunteer workers do not have full time employment and are often not employed at all. Some of them sell fat cakes, do food gardens, work at cash loans, make beads, depend on their husbands or parents, do piece jobs or knit jerseys. Many volunteers were recruited by retired sisters or sisters at clinics from the Department of Health. Some initiated their organisations from their churches, and belong to burial societies or church groups. "Thusong Health Project in Pretoria offers services to sex workers. Some sex workers want to change their job. We are now working on establishing a job creation project for them, starting with dressmaking". *Having to cater for all needs of the patient and family* �The problem is that your patients become fully dependent on you. On your visit you find that they do not have food, and they can�t take the medication you bring them without food. Even when their condition is such that they need to see a doctor, their family has no money for transport. They live in conditions where there is no piped water, and you have to carry many buckets of water into their room so that you can wash them. You also leave sufficient buckets of water in their room so that a family member can wash them for the two days that you will not be visiting. On the third day you however find that no-one washed the patient." "Although you have explained to your patient and the family about how home based care work, they are waiting for you as their saviour. You wonder now, how should you influence the family?" "Most of us have five patients whom we visit three times during the week. The family however calls us over weekends to attend to a crisis and to do the patients� dressing". "One of my patients once asked me for money to buy some fruit on his way to the hospital but I refused. Thereafter I felt so guilty that I bought a bag of oranges and sent it after him to hospital". "It is difficult to decide when to give and when not and dealing with your guilt. There is this bible story about the women who refused to help this stranger who asked for help, because she was waiting for Jesus to come to her door. But thereafter she found that the stranger whom she rejected was Jesus". "There was this one patient of ours who lay dead in her bed for three days, her baby still sucking and the husband was just sitting there drinking. This made me feel disturbed". "Another patient�s bedsores were that septic that the room had a smell. When I went to see my doctor, I cried and wanted him to wash the smell from my face". "The husband says �you stole my wife� when you refer her to a hospice. The husband is not dealing with the illness." "Our patients are the poorest of the poor, they give use many complaints and always wants something to eat. With no support from elsewhere, it now looks like it is your burden. The Health Department should support home caregivers and not leave them empty-handed. They should give us food parcels to hand out". "Hospitals dump dying patients on you and the care giver is being accused when the patient is worse. Caregivers get burnout and frustrations because families are not helpful and start to blame care givers if something happen to their sick person. They load all their problems on the caregiver especially after the death of the patient". "At times when I find my patient being angry and the family is also angry with him, I feel trapped between them not knowing what to do - how do I create a peaceful environment, how do I deal with powerlessness and anger?" "The patients that are referred to us are critical. Often their families abandon them and the hospital does not treat them - they are now dependant on the home care giver." "We have problems that we don�t know how to solve, like transport for patients and money for it. We go from pillar to post to get someone to offer a car, an ambulance and a donation to pay for the petrol. We are too few - we cannot reach everyone. If policy makers could see how organisations are struggling, do a research of organisations. People down here, their organisations have nothing. People up there should see and touch links down here. We should get a push, moral support. It is dark down here - someone should give light. We need support, even our youth". *The disabled* "Many of the families that we care for have problems with disabled members at home. For example, this one granny is taking care of her daughter�s child who is mentally disabled. She cannot send him to special school because she says she has no money for school fees. She says the Social welfare cannot help her, and she cannot remember with whom she talked. When I asked her out about her problem to get the child�s disability fund, it came out that the child does not have a birth certificate, and the mother in Johannesburg does not cooperate, and the social worker here does not do home visits." "There are no wheel chairs for people with stroke". *Dealing with denial* "People move around, especially after they had tested HIV positive. They cannot face their families and their friends reject them". "There is this one youth that just sits with his head in his hands. When I try and talk to him he chases me away". "My one client is HIV positive, but she does not tell her husband". "This year I buried four girls from one boyfriend. It is difficult to deal with denial, one way that works is to just keep on giving information and to make sure that people know where to get help and support". *Recognition and support from nurses, doctors and social workers - some successes and some let downs* "We as care givers, are committed to do our work in the community voluntarily and the people we serve have no food. The policy of DOH is that we care and support the people at home as hospitals are full with few available beds. However, when we visit the homes of our patients, we are faced with no travelling allowance and no material support to assist our duties or the needs of our patients". "Nurses ignore us when we want to assist them. Some even use abusive language that makes us angry. We even feel like giving up because we are not getting any incentives for doing the work we are doing voluntarily". "Some doctors are supportive and even treat our patients for free as long as the caregiver is present". "Social workers are problematic - they always have an excuse that they have no transport to visit patients. So the caregivers are pressurised to do something for the patients and have to pressurise social workers to do something". "Our caregivers always ask about vacant houses that could be used for home care or hospice. With their efforts we will in future run our own hospice in Soshanguve. Already, Legae Clinic donated 20 beds and a 13-roomed house has been given to us. We are just waiting for the finalisation of papers". "Our caregivers care for all patients with all their sicknesses at home. They thus underwent a three-day DOTS workshop at Tlamelong Clinic. 20 caregivers in 2 groups attended the workshop. No transport funds were provided. They were however grateful of the training opportunity provided to them". "We believe that networking and partnership with all stakeholders are important. So caregivers are taking initiative to introduce themselves so as to get moral support and donations, to be able to help those in need." "Another problem with social workers is that they are absent in new settlement areas - they quit to work in the city". "A big problem is that in some of our areas the social workers and clinic sisters do not recognise our counsellors, even though they received training through T-Net. The Department of Health should introduce them to the clinics". *Hospices, orphanages and child headed families* "There are few hospices and many orphans are left to fend for themselves and turn to the street". "One AIDS patient died and lefts four kids, who were taken to their uncle. The second-born did not get along with him and stayed at the shack. She got raped, but runs away when I approach her". "Some children are left alone, no one to support them with food and everything they want. Children no longer go to school. Some orphans do not have birth certificates and if we want to help them to get some grants this becomes a problem. There is also a problem for those who are from 7 years and up - they are not allowed to get any grant". *Voluntarism and incentives* "Some of us get incentives such as a transport allowance, R 500 for voluntary work and a diploma in Home Based Care and peer counselling." *Co-optation of People Living With AIDS who serve as care givers and HIV/AIDS counsellors* "We, as the Success Support Group don�t have the resources to take care of our family and taking care of our People With AIDS (PWAs). Our group does counselling and awareness raising, home and hospital visits and exhibitions. And the most important thing is SUPPORT - PWAs need moral support. As the Success Support Group, we have a big big problem about people wanting to make money through us PWAs. For instance, an individual started a project for PWAs through F-Company, S and Child Welfare. While he was looking forward to satisfy his needs and to use PWAs, we gained nothing even though we were bribed by his offer to give our children money for school and pre-school. Many people advised us that we must be careful of him and that he was no longer working at S but still used the name of F-Company. Another example is M-Hospice who gets food donations from W for PWAs while PWAs get nothing. The Success Group is trained to do counselling but while M-Training do accommodate us with office space, they do not provide for the use of other facilities such as telephone and fax. Worst of all, they ignore us and invite people from outside to do counselling. The other problem is when there is an AIDS awareness event, we volunteer to help them but at the end of the day we are nothing because they don�t even give mention of our names or recognise our group. M-H gain funding from our AIDS status - this, they do by expecting us to disclose our status at short notice to visitors for R 50, we however feel depressed and used thereafter." *Common themes pertinent to voluntary care work policy and funding* The care workers and I highlighted the following themes from their diaries and our collective discussion: Caregivers cater for all needs of the patient and family - social welfare, economic, physical and psychological health Their services are dependent on good linking and co-operation with doctors, sisters, nurses, social workers, psychologists and their organisations Voluntarism requires incentives and material support Care givers do an excellent job in taking care of their patients and providing information to family members to assist them to deal with diseases Hospices and orphanages are lacking and are being developed through government-community organisation The disabled and resources for them require urgent attention Care givers, the role of the community and their organisational structures (eg church groups), are not always given the recognition they deserve, and are often abused and co-opted for the selfish needs of the health professional and the NGO sector Developing organisations, often lacking in resources and ability to secure funding, are not necessarily unskilled or ineffective in the services that they offer to the public. My subsequent progress I thought that an approach of information exchange would facilitate a response from government, only to find that our government contact persons claimed that they had not received our report. Subsequently, the manager of T-Net arranged a meeting with a managing departmental official, and invited some care workers and me to attend. At this meeting I was surprised to learn that it was T-Net�s sponsorship that was stopped, and not all small organisations as I were made to (or had chosen) to believe. The government official, with whom we had a meeting, also informed us that the department never requested "debriefing sessions" for care workers. She however thought that government workers should first be engaged in action learning. She also warned that we were consulting "the wrong officials", and that T-Net should never have received funding because their proposal was weak. I could not help feeling somewhat mislead and paranoid about the situation. What happened seemed to me a repetition of my own story that I tended to be eager to help others, only to let myself to be abused by individuals or the system. Did I get the story wrong from the manager of T-Net? Was the department "full of politics"? I subsequently consoled myself by letting go of worrying about the whole incident - not to become trapped in a power play with others. No one in a development context wants to be told what to do and how to behave. Perhaps, it would help others and myself if I would stay focused on free information exchange. Subsequently, from a meeting with health professions by the AIDS directorate about their HIV/AIDS care programme, it did appear that some of the issues that were raised by our report were receiving attention. My participants and I had voiced our concerns about home-based care and perhaps we were being heard. On a follow-up, some of the home-based care NPOs also informed me that they had started regular meetings where their care workers share and reflect on their work experiences. However, others maintained that they missed that networking they had with care workers from other organisations and wished for a more collaborative form of debriefing. What does my results mean in theory? The virtual conference page on "Something for Nothing" encouraged me to wonder about the costs and gains of voluntary work for each participant involved - the client of the home-based care worker, the volunteer, the NGO management, government, professionals � Are we building a "predatory [health care] culture" of "stalkers and victims"? (McLaren, 1995, as cited in Critical Methods Webpage). (I have placed my additions to quoted texts in brackets). What kind of traps do we set? I agree with Kevin William, who had posted a comment on my abstract, that one should be wary of just blaming "the government". None of us really want to be obstructionist. A blaming approach would also further a power struggle, holding in place behaviours and relationships that were problematic in the first place. We would thus maintain "human development [as] � a unique set of tactics through which power proliferates and extends itself beyond the range of other development strategies" (Vaughan M Dutton, Subjects of Development, virtual Critical Methods Conference). As DJ had highlighted: "Perhaps we are all predators [and victims] - academics, home workers, nurses, dr's, politicians?". The problem of power, voice and the co-option of community members by those dominant for their egotistic needs have been major concerns for participatory researchers in the development context (Hall, 1992). Many discussions on civil society focus on different kind of institutions or associations, their behaviour and the relations between them. Questions have been raised about how the policies of government and international aid policies affect the health care system and the work done by volunteers and community health activists in developing countries. Relatively little attention is however given to the question what actually motivates people to found certain institutions or to get involved in them, e.g. to become an �activist� (Buijs, 2002) or a voluntary care worker. From a constructivist perspective, each community care practitioner has a unique tendency to act (and be trapped) in a certain way. Our tendencies are closely related to the assumptions and myths that we hold about the world and how we should operate upon it. Analysing the care workers� frustration and their diary entries, they appeared to gravitate toward the following tendencies and virtues: Filling in for � Catering for all needs Sympathy Guilt Powerlessness and anger In need of moral support Morality Perseverance Being abused Loving kindness I gather that many of the care workers, like me, tend to get trapped in the moral domain. Perhaps, in our eagerness to help others we compromise ourselves. Our uncritical support of the government�s new home-based care approach (an ideology) puts us at risk of becoming victims of the (our) approach. Thus, each participant, including governmental official, NPO manager, professional and volunteer care worker could find it useful to start with self (Pistorius, 2000) and to engage in critical reflection about his or her approach to home-based care work. Perhaps care workers (like me) should not be so eager to help others and health organisations and look critically at the approach they are supporting. To my understanding, health care professionals, together with the Department of Health, non-governmental organisations and churches in poor communities in South Africa had recently taken a community-based approach to HIV/AIDS care and prevention. This approach rests on the assumptions that: Terminally ill people can be treated in the community - at home or in a hospice - and by volunteer workers who are community members Ideally, people prefer to die at home or in their community, maintaining personal dignity and contact with loved ones Community members can be trained to deliver community education, peer counselling and home-based care The HIV/AIDS epidemic will be curbed through community members� active involvement in treatment and prevention efforts Community-base care, primary health care and prevention are programmes that many of us fought for as part of our struggle for an equitable and community participatory health care system during the 1980s. Hence, it is understandable that we should rejoice that government together with community and professional players would embrace this approach. However, from my debriefing experience it is clear that home-base care not only poses gains, but also some serious emotional and financial costs. One would suppose that these costs were unexpected and that voluntary care workers engage and persevere in their work because they believe that home-based care could help them achieve the democratic health care system we all had in mind? What are the dynamics around voluntarism and home-based care in poor and developing communities? I found a fair amount of literature on voluntarism as a positive institution in society and how to be a good leader of voluntary workers (Cf. Voluntas. International Journal of Voluntary and Nonprofit Organizations; Nonprofit and Voluntary Sector Quarterly; and, Internet Nonprofit Center). There is a growing recognition of the importance of social capital in maintaining a healthy and vibrant civil society. Volunteering is viewed as a core component of social capital (Onyx & Leonard, 2002). In terms of my search, volunteer workers should benefit from an appreciative inquiry and the building of organisational skills. Perhaps my home-based care worker organisations and government are disorganised. I could however not find any reports on home-based care for the terminally ill that shows that the writer attempted to: (a) reflect in public on the difficulties that voluntary AIDS care workers experience, and (b) search for ways to deal with the challenges that care workers are faced with, e.g. care and support of the care worker. The few project reports that I had come across about this approach, were mostly presented in newspapers and newsletters. Some examples include: A report in the Sunday Times, August 25 2002, "They brought me back from death. Programme involved in row over UN funding takes the load off hospitals by treating HIV-positive people as outpatients" by Mawande Jubasi. During May 2002, Hospice Care Plus, Kentucky, received the innovation of the week, from The Peter F. Drucker Foundation for Nonprofit Management, for expanding hospice care to terminally ill patients who wish to remain at home while also offering individuals the opportunity to develop marketable skills (<http://drucker.org/innovation/innov-of-week/>). These care workers were paid by the family for their home care work, which included cleaning the patient�s room and doing house sitting. I also attended the African Conference on the Social Aspects of HIV/AIDS Research (SAHARA), organised by the Human Science Research Council, 1-4 September 2002 and was impressed that there were various presentations about home-based care projects (Cf. Modiba, 2002; Williams, 2002; Mundeta & Gomo, 2002;). These presentations however confirmed my concern that presenters mainly talked about their positive achievements. Only one presenter (Williams, 2002) highlighted that they were planning to study the impact that home-based care work has on youth care workers and that for their support they had tried to link youth care workers up with older care groups. The above-mentioned reports offered the following perceptions about the gains for different players from community and home-based care: Governmental clinics and hospitals can keep patient admissions down. The costs of health services and hospitalisations will be lowered. Community members who become volunteer workers gain skills and contacts that will make them employable. Volunteer workers are trained and recognised by reputable community and government organisations. Volunteer workers gain a sense of meaning and respect through their altruistic offering of community services. The terminally ill and their families can gain support for themselves and their family from volunteers whom they can respect and trust as of good reputation. HIV-positive people can secure support, for themselves and their family members, by offering their voluntary services to AIDS service organizations. Some of the SAHARA presentations had shed some light on my "debriefing experience". A presentation by Swartz (2002), on "The impact of local government HIV/AIDS programmes in South Africa", showed that home-based care projects are from amongst the most popular HIV/AIDS projects that community members embark on nowadays. Another enlightening presentation was by Mabetoa (2002), the HIV/AIDS director of the Department of Social Development, who gave a critical analysis on "The social impact of HIV/AIDS and the growing demand for social development services". She highlighted that although there was a growing demand for social development services at local community level, this were yet to be incorporated into HIV/AIDS programmes. HIV/AIDS programmes often focus on physical aspects, she said. The "Integrated Community Based Care and Support Model" is "an ideal situation and making it work has many challenges". Perhaps then, because it is a new approach, participants tend to emphasise positive gains, letting "negativities" remain in the background. What I had found helpful though, was to contrast how stories of home-based care work differed to my "debriefing experience". For example, the Red Cross in Southern Africa (Mundeta, 2002) had strong organisational resources - such as being international and successful in terms of funding - and had provided incentives and recognition for volunteers. These incentives include, an allowance, a bicycle, a uniform, food parcels for the volunteer as well as for patients, support groups, and networking conferences for volunteers. Furthermore, Vicky Timm, who made a presentation on "Being a hospice worker: Jay�s story", at the Critical Methods Conference, showed that her hospice worker was basically happy. His story contrasted with my care worker experiences - Jay�s hospice organisation had provided him an allowance, had support groups for care workers, and Jay did not have to grapple with challenges such as not having access to piped water, electricity, ambulances, social workers, medical services, being unemployed, etc. It is tough to work in a poor community. I urge anyone to try to do in a poor community what they are doing successfully in an affluent community. Health care is more expensive in poor communities; it is more expensive to maintain your health when you have no access to water and electricity. From my "debriefing experience, it seems that government and NGO health care organisations tighten their belts, and the volunteer workers pay the costs. Is that fair? Is that sustainable? As one Critical Methods Conference participant pointed out, their volunteer organisation collapsed because members were expected to use and offer their own resources to carry organisational activities. This confirm my suspicion that volunteers tend to be eager to help others, and support popular ideas, only to be abused by dominant individuals or the system. Unemployed voluntary care workers seem particularly at risk of being subjugated to the dominant ideas and perceptions that their programme planners hold. Thus, structural inequalities in their community and workplace are being maintained under the ideological banner of "community-based health care" and "democracy". Care workers may thus (tend to) become the victims of, and fall prey to, the community-based care programmes that are instituted by those in power. To turn an oppressive system around, care workers should be assisted to have "the knowledge, skills, values and attitudes to question, understand, interrogate and eventually act as change agents of structural inequalities in their place of employment" (Giroux, 1988, as cited on Critical Methods web page). Government officials, professionals and NGO managers should question whether their application of a new approach to things do not maintain the status quo (i.e. inequality), and do not make matters worse for others. It could also be helpful to reflect critically: Why do we expect home-based care work to be voluntary? Does voluntary work mean "no pay", or, a "not-for-profit" payment? Why is it that most home-based care workers are female? Do we expect from them to clean people�s rooms and to clean their wounds for free, because they are women? HIV/AIDS programme planners should thus take care of the values and psychosocial aspects underlying their approach and include care of the care worker into their budgets. What should be done? How should participants of home-base care take care of their approach and care of care workers? It could be helpful if all of role players engage in a process of critical self-reflection and share their reflections collectively. By starting with self, participants take cognisance of their personal tendencies and how this may interfere with their progress. Such a process may make it less likely that participants engage in blaming or defensive interaction, perpetuating a struggle approach to life. A sharing of reflections, including our stories of experiential learning and trial and error, are bound to lead to positive responses from others. Take for example the food parcels that home-based care workers can get for their clients from the Department of Welfare nowadays. One of the aspects of the debriefing sessions that the care workers valued most was that they could share their experiences and self-reflections with people outside their usual circle of contacts. My reflections were furthermore aided when I could share, and contrast, my experience with others elsewhere and during the Critical Methods Conference. It is through noticing how our experiences and contexts differ, that I can see a bigger picture. For now, I believe that we can create knowledge both individually and collectively through an appreciation of difference in Bateson�s sense - knowledge is information that makes a difference (Cf. Bateson, 1972, 1979). Cherishing one�s own and other people�s information (their difference and creativity), may offer an alternative and also more resourceful and socially responsible way of dealing with home-based care. 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Abstract presented on 8th Qualitative virtual Critical Methods Conference, Something for Nothing: Subjectivity and society in the New Economy, Centre for Applied Psychology, University of South Africa, Pretoria. Giroux, H. (1988). The transformative intellectual. Cited on the 8th Qualitative virtual Critical Methods Conference, Something for Nothing: Subjectivity and society in the New Economy, Centre for Applied Psychology, University of South Africa, Pretoria. Hall, B.L. (1992). From margins to center? The development and purpose of participatory research. American Sociologist, 23(4), 15-28. Hospice Care Plus (2002, May). The Companion Program. Cited on The Peter F. Drucker Foundation for Nonprofit Management, Drucker Nonprofit Innovation Discovery Site, <http://drucker.org/innovation/innov-of-week/> and http://pfdf.org/innovation/innovation/innovation.asp?innov-id=159. Internet Nonprofit Center, Infromation for and about nonprofits, http://www.nonprofits.org/ William, K. (2002, September). Comments on abstract. Voluntary HIV/AIDS home-based care work traps = a predatory health care system? Presented on 8th Qualitative virtual Critical Methods Conference, Something for Nothing: Subjectivity and society in the New Economy, Centre for Applied Psychology, University of South Africa, Pretoria. Mabetoa, M. (2002, September). The social impact of HIV/AIDS and the growing demand for social development services. Paper presented at the African Conference on the Social Aspects of HIV/AIDS Research (SAHARA), Human Science Research Council, Pretoria. Jubasi, M. (2002, August 25) They brought me back from death. Programme involved in row over UN funding takes the load off hospitals by treating HIV-positive people as outpatients. Report in Sunday Times, p.13, South Africa. McLaren, P. (1995). Cultural Pedagogy and Predatory Culture. Book cited on the 8th Qualitative virtual Critical Methods Conference, Something for Nothing: Subjectivity and society in the New Economy, Centre for Applied Psychology, University of South Africa, Pretoria. Modiba, P. (2002, September). The integration of HIV/AIDS Care and Support into primary health care in Gauteng Province (South Africa). Paper presented at the African Conference on the Social Aspects of HIV/AIDS Research (SAHARA), Human Science Research Council, Pretoria. Mundeta, B. & Gomo, E. (2002, September). Red Cross Societies and HIV/AIDS: Southern African experiences and plans in prevention and care. Paper presented at the African Conference on the Social Aspects of HIV/AIDS Research (SAHARA), Human Science Research Council, Pretoria. Nonprofit and Voluntary Sector Quarterly, Sage Publications, Inc. Onyx, J. & Leonard, R. (2002, July). The relationship between formal and informal volunteering: A social capital framework. Paper presented at the International Society for Third-sector Research Fifth International Conference, Transforming Civil Society, Citizenship and Governance: The Third Sector in an Era of Global (Dis)order, Cape Town, South Africa. Pistorius, A.G. (2000). Participatory community development - a networking approach. Unpublished doctoral thesis, University of South Africa, Pretoria Swartz, L. (2002, September). The impact of local government HIV/AIDS programmes in South Africa. Paper presented at the African Conference on the Social Aspects of HIV/AIDS Research (SAHARA), Human Science Research Council, Pretoria. Timm, V. (2002, September). Being a hospice worker: Jay�s story. Paper presented on 8th Qualitative virtual Critical Methods Conference, Something for Nothing: Subjectivity and society in the New Economy, Centre for Applied Psychology, University of South Africa, Pretoria. Voluntas, International Journal of Voluntary and Nonprofit Organizations, http:// www. Istr.org/pubs/voluntas/ Williams, E. (2002, September). Increasing access to care and support for PLHA: Building the capacity of youth caregivers in rural Zambia. Paper presented at the African Conference on the Social Aspects of HIV/AIDS Research (SAHARA), Human Science Research Council, Pretoria.
	Peer reviews of this paper appear below.
	Review 1 Dear Annalie This is the first time that I engaged in a virutal review environment. Maybe my comments and suggestions are not applicable, but I would like to learn from you and the process. I read about three stories in your article. The first story is about the volunteers, the second about the process of involvement and the third story is your voice about your experiences as well as a reflection on the process. These three story lines are sometimes more visible than others. I would have appreciated a clearer description of your own story. In your abstract I wondered by whom the debriefing sessions were requested? What is the meaning of "a developmental orientation"? What was the "model for care worker self-development"? A richer dscirption of the contexts in which the care workers worked would have been helpful to understand the issues that they deal with. And I assume they were all women? Where they? Can I read "action learning" and "experiential learning" as describing the same concept? How did the group decide what topics to discuss? You said that the aim according to you was that they hand an opportunity to talk about their frustrations and traumatic experiences. I also saw something of a commitment and perseverance in the whole process. One of the issues that I also noted in the care workers verbal transcripts was guilt feelings. I wondered how that contributed to their involvement in the caring for others and how it played into the dynamics of exploitation. How were the themes determined that you discussed as commen themes pertinent to voluntary care work police and funding? And I was wondering about the emotional "cost" involved? Kind regards Vera Roos
	Review 2
	Author reply Dear Vera, Thank you for your helpful comments. I made some clarifying changes in the text. Kind regards Annalie

1 Dec 2004 - -h1-Please check the sites about- Tons of interesdting stuff!!! -/h1-

10 Sep 2002 - would like to know more about care for care givers. Otherwise great ork done - uhiriwe mary

Action learning and reflection with HIV/AIDS home-based care workers in Gauteng
8th Annual Qualitative/Critical Methods Conference - Critical Methods Society

Something for nothing

	Paper presented at the 8th Annual Qualitative Methods Conference: "Something for nothing" 1 May to 30 September 2002 (http://criticalmethods.org/p105.mv)
	Voluntary HIV/AIDS home-based care work traps = A predatory health care system? Annalie G. Pistorius Contact e-mail: [email protected] Affiliation: Department of Psychology, Medical University of Southern Africa
	Last year, I had engaged voluntary home-based care workers and HIV/AIDS peer counsellors in small group discussions, using action learning and encouraging each to keep a personal journal on their care work experiences. The need for the "debriefing of traumatised" home-based care workers was identified by a peer support training organisation together with a managing governmental official, HIV/AIDS counsellors, home-based care workers and their community organisations in Tshwane, South Africa. When the government official requested me to do "debriefing sessions" with the home-based care workers, and offered payment thereof, I was impressed about their serious attending to the care worker�s personal and community development challenges. At commencement of the sessions, I was also moved with the great number of volunteers, many but not all of them HIV-positive, mostly women, many mobilised by members of the health department and community groups in support of people living with HIV/AIDS and dying at home. I thought: "something positive is happening - community organisations are being sponsored to train community volunteers in peer counselling and home-based care". The voluntary workers opened up very easily and offered many personal stories about their home-based care experiences that made them feel traumatised and powerless. I was hoping to assume a developmental orientation, promoting more than mere crisis intervention. I managed to give the counsellors and care workers an opportunity to reflect on and share experiences related to an appreciation of their services, eg what motivated them to do this kind of work, their personal tendencies and how they dealt creatively with problems. They also voiced common dilemmas pertinent to policy-making and funding. Common themes included: being in the front line and having to deal with all the needs of the patient/client; the lack of multi-sectoral and inter-departmental co-operation; voluntarism requires incentives and material support; and, care givers are not always given the recognition they deserve, yet they are being co-opted for the selfish needs of the health sector. We also explored a model for care worker self-development, which entailed balancing power and control issues with facilitating information flow and creativity. My sessions were however stopped halfway through by the manager of the organisation that had arranged them. He informed me: "government decided to stop funding of small organisations". I responded by calling all participants together into a final session, pulling together their common themes and frustrations into a collective feedback report to the AIDS directorate of government. I thought that a shift to facilitating information flow would render a response, only to find that our government contact persons claimed that they had not received our report. Moreover, I was informed that it was the said organising NGO who's sponsorship was stopped, that government never requested "debriefing sessions", that we should not consult "the wrong officials", etc. I could not help feeling somewhat mislead and paranoid. What happened seemed to me a repetition of my story that I tended to be eager to help others, only to be abused by individuals or the system. The virtual conference page on "Something for Nothing" also encourage me now to wonder about the costs and gains of voluntary work for each participant involved - the client of the home-based care worker, the volunteer, the NGO management, government, professionals � Are we building a "predatory (health care) culture" of "stalkers and victims"? (McLaren, 1995). What kind of traps do we set?
	Introduction In this paper I present the experience I had with the debriefing of voluntary home-based care workers and HIV/AIDS peer counsellors in and around Tshwane (Pretoria) during 2001. I reflect on what proceeded when the sessions were stopped by the managing organisation when their governmental funding ended. I include extracts from the diary entries and inputs that the care workers had offered me concerning their experiences of home-based care, which we provided in a feedback report to the Gauteng HIV/AIDS Directorate of the Department of Health. I theorise on how different players (like me) might tend to be eager to help others while being uncritical of how our support of a new approach may make matters worse. I also include the responses I gained from others and during the Critical Methods Conference, searching for ways on how to turn the problem around. I finally offer some ideas on how participants of the home-based care approach could take care of themselves and care workers. Debriefing voluntary home-based care workers Last year, I had engaged voluntary home-based care workers and HIV/AIDS peer counsellors in small group discussions, using action learning and encouraging each to keep a personal journal on their care work experiences. The need for the "debriefing of traumatised" home-based care workers was identified by a peer support training organisation together with a managing governmental official, HIV/AIDS counsellors, home-based care workers and their community organisations in Tshwane, South Africa. When the government official requested me to do "debriefing sessions" with the home-based care workers, and offered payment thereof, I was impressed about their serious attending to the care worker�s personal and community development challenges. At commencement of the sessions, I was also moved with the great number of volunteers, many but not all of them HIV-positive, mostly women, many mobilised by members of the health department and community groups in support of people living with HIV/AIDS and dying at home. I thought: "something positive is happening - community organisations are being sponsored to train community volunteers in peer counselling and home-based care". The request for the "debriefing sessions" and offers of payment thereof also indicated their serious attending to the care worker�s personal and community development challenges. The training organisation (whom I will refer to as the Training Network, T-Net) served 18 CBOs in and around Thswane in Gauteng (including Hammanskraal and Cullinan). (T-Net is a pseudonym. I have used pseudonyms whenever the identities of individuals or organisations are at stake). The care workers and their organisations were based in poor and low to middle class communities in the townships and informal settlements around Pretoria. As these organisations were mostly small and developing and no fees were charged by T-Net for its services. Instead, the Gauteng HIV/AIDS Directorate provided T-Net funding to sponsor a manager�s salary, and the training sessions on home-based care, peer counselling and mentoring. The organisation impressed me with their networking approach to achieving their objectives. It had one manager (and a committee) who contracted independent professionals to carry out their training tasks. I understood that debriefing in the context of home based care and HIV/AIDS counselling entailed the aim to provide counsellors and care workers an opportunity to talk about their frustrations and traumatic experiences, ventilate emotions, and to consolidate these into an appreciative understanding. I also wanted to introduce a further aim, which was to prepare each care worker to reflect on his or her helping practices, to share their reflections with others and through collaborative reflection to generate some ideas on how to deal creatively with their problems and resources. I was hoping to engage my participants in a process of self-reflection and experiential learning, assuming a developmental orientation. The manager of T-Net and I started off with a meeting which all the care workers from the different client organisations attended, to discuss the need that was expressed for debriefing as well as the practicalities thereof. During this meeting, the care workers impressed me with their noble intentions and enthusiasm about home-based care work. I was impressed with their dedication to serve patients at home in return for nothing at all. Many of them expressed how their voluntary community work had given them a sense of meaning and purpose, because they were unemployed and feeling useless. Some of them just recently learned that they are HIV-positive. On exploring the need for debriefing, I found only a few care workers who felt traumatised by the way someone died. Most of the care workers� need for debriefing, centred on feelings of powerlessness and a lack of care worker support. "The policy of Department of Health is that we care and support the people at home as hospitals are full with few available beds. Many home care workers were mobilised by nurses and work hand-in-hand with them to help take care of patients at home and distribute their tablets. Hospitals are full and we have to care and support people at home. We are committed to do our work in the community voluntarily and the people we serve have no food. However, when we visit the homes of our patients, we are faced with no travelling allowance and no material support to assist our duties or the needs of our patients, such as dealing with the lack of ambulance services. Further, clinics and hospitals have become short staffed and many nurses have left the country. Care givers are thus expected to do more - filling in for the nurse." We all agreed that there was an urgent need for the debriefing sessions. I introduced them to action learning and collaborative action research. I requested them to each keep a personal diary in which they would describe problematic events and reflect on how they managed them. They were to share their notes in small group context and talk about their problem solving ideas. Where possible, each group would comprise of members from different organisations. The idea was that care workers would have the opportunity to exchange ideas with care workers elsewhere. Hopefully, from such a broader sharing of ideas new insights would also be generated. Subsequent to the first meeting, four groups of approximately 8 care workers per group engaged bi-monthly in debriefing sessions. The idea was that another round of four groups would follow thereafter, and so on for others. Participants were encouraged to keep personal diaries in their vernacular and translations were done during group sessions. During group discussions I aimed at attending to their personal style and organisational resources that related to their problem solving. The care workers were also encouraged to identify common themes and share creative ideas on ways to manage problems. The care workers� responses to my requests were surprisingly positive. Most of them impressed me with how dedicated they were at keeping their diaries and case notes. Keeping a diary made sense to them. As one care worker had put it: "Keeping a diary works well for problems solving, because you have to pause a bit and reflect on what you do from a distance. This gives you a chance to think critically about what you are going to do next, and not just going ahead and becoming overwhelmed by what happens". The care workers also seemed to enjoy opening up and comparing their experiences with care workers from other communities. The manager of T-Net had planned four sessions for the first four groups over a period of two months. However, the sessions were stopped halfway through, after they had engaged in two or three sessions, because T-Net�s governmental funding was stopped. The T-Net manager informed me: "government decided to stop funding small organisations". The funding policy of government had apparently shifted to the channelling of grants to organisations that have the capacity to manage large amounts of funds. This raised concern for the livelihood of small and developing organisations and the effectiveness of channelling their funding under the auspices of bigger organisations and consortia. Another concern was that a once-off seed fund for small, and developing Non-Profit Organisations (NPOs) were problematic for their survival. Social policymaking that showed concern for HIV/AIDS community workers and their developing organisations seemed critical. I responded by calling all participants together in a final session. Through group work, we identified common themes and stories from their diaries, my notes from sessions and our group discussion. Hence, participants and I pulled together their common themes and frustrations into a collective feedback report to the Gauteng AIDS Directorate of the Department of Health. The specific aims of this report were to: "(a) give voice to the problems that HIV/AIDS community workers and their organisations experience in the course of their community services; (b) promote an appreciation of the valuable social capital that South Africa enjoys in the field of HIV/AIDS community-based health and welfare services, by community workers in co-operation with government; and (c) give information that was pertinent to policy making and funding arrangements of government". We also requested a response from the HIV/AIDS Directorate on our report, and about policy and funding plans concerning HIV/AIDS workers and their organisations. What follows are extracts from our report, including my notes and diary inputs from the care workers. The report dealt with the home-based care workers� resources, motivation, experiences and problems, and common themes pertinent to voluntary care worker policy and funding. The care workers and their managing committees gave their permission that their inputs are included in reports to government, professionals and the public. *Organisational Resources and Social Capital* "EACH in Eersterust was started 10 years ago by clinic sisters and community members. We did a research and identified cancer and psychiatric patients as in need. We started support groups with the clients and families. Spare rooms at the clinic were given to the organisation cost free. Our activities were done with the assistance of the sister in charge at the clinic, nurses and the occupational therapist from the University of Pretoria. We have twelve volunteers. We have different support groups from Monday to Thursday for patients with stroke, disabilities, arthritis, cancer, HIV/AIDS and psychiatry. In the afternoon after each group, the sister goes out with the volunteers to visit the sick. We started home-based care funded by the Department of Health in 2000. We have five home caregivers who were trained. They serve patients with stroke, TB, cancer, diabetes, mental health and AIDS. When their patients die, they prepare the family and assist them through the process. We are in the process of erecting a Hospice Respite Centre, co-funded by the Japanese Embassy. We do fund rising three times a year for different projects". "Kopano ke Maatla (Atteridgeville) was started in 1999. We are 35 caregivers. We do home based care for patients with stroke HIV/AIDS and are Dots supporters for TB patients. We see 3 to 5 patients each per week, and do visits three to four times per week. We support 6-10 TB patients per day. We do it because we have something to do, can share with them and care for them". "The Institute for Primary Health (Soshanguve) was established in 1994. The organisation is registered under section 21 and the NPO Welfare act. They have four full time staff, 10 full time volunteers who receive R 500 per month incentive from the Department of Health. There is a further 20 volunteer support group. The organisation also has a management committee and a board of directors. Activities include home based care, school talks, counselling, radio talk shows, church outreach and a youth programme". "Thembelisha (Mamelodi) has 20 caregivers. Church members of the Apostic Faith Mission started this project in February 2000. Their aim is to help people who are terminally ill and who are living alone and dying with no one to look after. As a church organisation a lot of people bring problems at church and we realised that there is a need to help the community, which is suffering from HIV/AIDS and related diseases. Initially, we did not have anything, e.g. medicine, gloves and money for transport to go door-to-door visiting our patients. The church now gives us Sunday offerings to help for transport. We are operating in Stanza Bopape and around Nellmapius. We are being helped by our local clinics in Stanza I and II. It is our spirituality that makes us keep on going - we do it for the love and moral support we can give others". Volunteer workers do not have full time employment and are often not employed at all. Some of them sell fat cakes, do food gardens, work at cash loans, make beads, depend on their husbands or parents, do piece jobs or knit jerseys. Many volunteers were recruited by retired sisters or sisters at clinics from the Department of Health. Some initiated their organisations from their churches, and belong to burial societies or church groups. "Thusong Health Project in Pretoria offers services to sex workers. Some sex workers want to change their job. We are now working on establishing a job creation project for them, starting with dressmaking". *Having to cater for all needs of the patient and family* �The problem is that your patients become fully dependent on you. On your visit you find that they do not have food, and they can�t take the medication you bring them without food. Even when their condition is such that they need to see a doctor, their family has no money for transport. They live in conditions where there is no piped water, and you have to carry many buckets of water into their room so that you can wash them. You also leave sufficient buckets of water in their room so that a family member can wash them for the two days that you will not be visiting. On the third day you however find that no-one washed the patient." "Although you have explained to your patient and the family about how home based care work, they are waiting for you as their saviour. You wonder now, how should you influence the family?" "Most of us have five patients whom we visit three times during the week. The family however calls us over weekends to attend to a crisis and to do the patients� dressing". "One of my patients once asked me for money to buy some fruit on his way to the hospital but I refused. Thereafter I felt so guilty that I bought a bag of oranges and sent it after him to hospital". "It is difficult to decide when to give and when not and dealing with your guilt. There is this bible story about the women who refused to help this stranger who asked for help, because she was waiting for Jesus to come to her door. But thereafter she found that the stranger whom she rejected was Jesus". "There was this one patient of ours who lay dead in her bed for three days, her baby still sucking and the husband was just sitting there drinking. This made me feel disturbed". "Another patient�s bedsores were that septic that the room had a smell. When I went to see my doctor, I cried and wanted him to wash the smell from my face". "The husband says �you stole my wife� when you refer her to a hospice. The husband is not dealing with the illness." "Our patients are the poorest of the poor, they give use many complaints and always wants something to eat. With no support from elsewhere, it now looks like it is your burden. The Health Department should support home caregivers and not leave them empty-handed. They should give us food parcels to hand out". "Hospitals dump dying patients on you and the care giver is being accused when the patient is worse. Caregivers get burnout and frustrations because families are not helpful and start to blame care givers if something happen to their sick person. They load all their problems on the caregiver especially after the death of the patient". "At times when I find my patient being angry and the family is also angry with him, I feel trapped between them not knowing what to do - how do I create a peaceful environment, how do I deal with powerlessness and anger?" "The patients that are referred to us are critical. Often their families abandon them and the hospital does not treat them - they are now dependant on the home care giver." "We have problems that we don�t know how to solve, like transport for patients and money for it. We go from pillar to post to get someone to offer a car, an ambulance and a donation to pay for the petrol. We are too few - we cannot reach everyone. If policy makers could see how organisations are struggling, do a research of organisations. People down here, their organisations have nothing. People up there should see and touch links down here. We should get a push, moral support. It is dark down here - someone should give light. We need support, even our youth". *The disabled* "Many of the families that we care for have problems with disabled members at home. For example, this one granny is taking care of her daughter�s child who is mentally disabled. She cannot send him to special school because she says she has no money for school fees. She says the Social welfare cannot help her, and she cannot remember with whom she talked. When I asked her out about her problem to get the child�s disability fund, it came out that the child does not have a birth certificate, and the mother in Johannesburg does not cooperate, and the social worker here does not do home visits." "There are no wheel chairs for people with stroke". *Dealing with denial* "People move around, especially after they had tested HIV positive. They cannot face their families and their friends reject them". "There is this one youth that just sits with his head in his hands. When I try and talk to him he chases me away". "My one client is HIV positive, but she does not tell her husband". "This year I buried four girls from one boyfriend. It is difficult to deal with denial, one way that works is to just keep on giving information and to make sure that people know where to get help and support". *Recognition and support from nurses, doctors and social workers - some successes and some let downs* "We as care givers, are committed to do our work in the community voluntarily and the people we serve have no food. The policy of DOH is that we care and support the people at home as hospitals are full with few available beds. However, when we visit the homes of our patients, we are faced with no travelling allowance and no material support to assist our duties or the needs of our patients". "Nurses ignore us when we want to assist them. Some even use abusive language that makes us angry. We even feel like giving up because we are not getting any incentives for doing the work we are doing voluntarily". "Some doctors are supportive and even treat our patients for free as long as the caregiver is present". "Social workers are problematic - they always have an excuse that they have no transport to visit patients. So the caregivers are pressurised to do something for the patients and have to pressurise social workers to do something". "Our caregivers always ask about vacant houses that could be used for home care or hospice. With their efforts we will in future run our own hospice in Soshanguve. Already, Legae Clinic donated 20 beds and a 13-roomed house has been given to us. We are just waiting for the finalisation of papers". "Our caregivers care for all patients with all their sicknesses at home. They thus underwent a three-day DOTS workshop at Tlamelong Clinic. 20 caregivers in 2 groups attended the workshop. No transport funds were provided. They were however grateful of the training opportunity provided to them". "We believe that networking and partnership with all stakeholders are important. So caregivers are taking initiative to introduce themselves so as to get moral support and donations, to be able to help those in need." "Another problem with social workers is that they are absent in new settlement areas - they quit to work in the city". "A big problem is that in some of our areas the social workers and clinic sisters do not recognise our counsellors, even though they received training through T-Net. The Department of Health should introduce them to the clinics". *Hospices, orphanages and child headed families* "There are few hospices and many orphans are left to fend for themselves and turn to the street". "One AIDS patient died and lefts four kids, who were taken to their uncle. The second-born did not get along with him and stayed at the shack. She got raped, but runs away when I approach her". "Some children are left alone, no one to support them with food and everything they want. Children no longer go to school. Some orphans do not have birth certificates and if we want to help them to get some grants this becomes a problem. There is also a problem for those who are from 7 years and up - they are not allowed to get any grant". *Voluntarism and incentives* "Some of us get incentives such as a transport allowance, R 500 for voluntary work and a diploma in Home Based Care and peer counselling." *Co-optation of People Living With AIDS who serve as care givers and HIV/AIDS counsellors* "We, as the Success Support Group don�t have the resources to take care of our family and taking care of our People With AIDS (PWAs). Our group does counselling and awareness raising, home and hospital visits and exhibitions. And the most important thing is SUPPORT - PWAs need moral support. As the Success Support Group, we have a big big problem about people wanting to make money through us PWAs. For instance, an individual started a project for PWAs through F-Company, S and Child Welfare. While he was looking forward to satisfy his needs and to use PWAs, we gained nothing even though we were bribed by his offer to give our children money for school and pre-school. Many people advised us that we must be careful of him and that he was no longer working at S but still used the name of F-Company. Another example is M-Hospice who gets food donations from W for PWAs while PWAs get nothing. The Success Group is trained to do counselling but while M-Training do accommodate us with office space, they do not provide for the use of other facilities such as telephone and fax. Worst of all, they ignore us and invite people from outside to do counselling. The other problem is when there is an AIDS awareness event, we volunteer to help them but at the end of the day we are nothing because they don�t even give mention of our names or recognise our group. M-H gain funding from our AIDS status - this, they do by expecting us to disclose our status at short notice to visitors for R 50, we however feel depressed and used thereafter." *Common themes pertinent to voluntary care work policy and funding* The care workers and I highlighted the following themes from their diaries and our collective discussion: Caregivers cater for all needs of the patient and family - social welfare, economic, physical and psychological health Their services are dependent on good linking and co-operation with doctors, sisters, nurses, social workers, psychologists and their organisations Voluntarism requires incentives and material support Care givers do an excellent job in taking care of their patients and providing information to family members to assist them to deal with diseases Hospices and orphanages are lacking and are being developed through government-community organisation The disabled and resources for them require urgent attention Care givers, the role of the community and their organisational structures (eg church groups), are not always given the recognition they deserve, and are often abused and co-opted for the selfish needs of the health professional and the NGO sector Developing organisations, often lacking in resources and ability to secure funding, are not necessarily unskilled or ineffective in the services that they offer to the public. My subsequent progress I thought that an approach of information exchange would facilitate a response from government, only to find that our government contact persons claimed that they had not received our report. Subsequently, the manager of T-Net arranged a meeting with a managing departmental official, and invited some care workers and me to attend. At this meeting I was surprised to learn that it was T-Net�s sponsorship that was stopped, and not all small organisations as I were made to (or had chosen) to believe. The government official, with whom we had a meeting, also informed us that the department never requested "debriefing sessions" for care workers. She however thought that government workers should first be engaged in action learning. She also warned that we were consulting "the wrong officials", and that T-Net should never have received funding because their proposal was weak. I could not help feeling somewhat mislead and paranoid about the situation. What happened seemed to me a repetition of my own story that I tended to be eager to help others, only to let myself to be abused by individuals or the system. Did I get the story wrong from the manager of T-Net? Was the department "full of politics"? I subsequently consoled myself by letting go of worrying about the whole incident - not to become trapped in a power play with others. No one in a development context wants to be told what to do and how to behave. Perhaps, it would help others and myself if I would stay focused on free information exchange. Subsequently, from a meeting with health professions by the AIDS directorate about their HIV/AIDS care programme, it did appear that some of the issues that were raised by our report were receiving attention. My participants and I had voiced our concerns about home-based care and perhaps we were being heard. On a follow-up, some of the home-based care NPOs also informed me that they had started regular meetings where their care workers share and reflect on their work experiences. However, others maintained that they missed that networking they had with care workers from other organisations and wished for a more collaborative form of debriefing. What does my results mean in theory? The virtual conference page on "Something for Nothing" encouraged me to wonder about the costs and gains of voluntary work for each participant involved - the client of the home-based care worker, the volunteer, the NGO management, government, professionals � Are we building a "predatory [health care] culture" of "stalkers and victims"? (McLaren, 1995, as cited in Critical Methods Webpage). (I have placed my additions to quoted texts in brackets). What kind of traps do we set? I agree with Kevin William, who had posted a comment on my abstract, that one should be wary of just blaming "the government". None of us really want to be obstructionist. A blaming approach would also further a power struggle, holding in place behaviours and relationships that were problematic in the first place. We would thus maintain "human development [as] � a unique set of tactics through which power proliferates and extends itself beyond the range of other development strategies" (Vaughan M Dutton, Subjects of Development, virtual Critical Methods Conference). As DJ had highlighted: "Perhaps we are all predators [and victims] - academics, home workers, nurses, dr's, politicians?". The problem of power, voice and the co-option of community members by those dominant for their egotistic needs have been major concerns for participatory researchers in the development context (Hall, 1992). Many discussions on civil society focus on different kind of institutions or associations, their behaviour and the relations between them. Questions have been raised about how the policies of government and international aid policies affect the health care system and the work done by volunteers and community health activists in developing countries. Relatively little attention is however given to the question what actually motivates people to found certain institutions or to get involved in them, e.g. to become an �activist� (Buijs, 2002) or a voluntary care worker. From a constructivist perspective, each community care practitioner has a unique tendency to act (and be trapped) in a certain way. Our tendencies are closely related to the assumptions and myths that we hold about the world and how we should operate upon it. Analysing the care workers� frustration and their diary entries, they appeared to gravitate toward the following tendencies and virtues: Filling in for � Catering for all needs Sympathy Guilt Powerlessness and anger In need of moral support Morality Perseverance Being abused Loving kindness I gather that many of the care workers, like me, tend to get trapped in the moral domain. Perhaps, in our eagerness to help others we compromise ourselves. Our uncritical support of the government�s new home-based care approach (an ideology) puts us at risk of becoming victims of the (our) approach. Thus, each participant, including governmental official, NPO manager, professional and volunteer care worker could find it useful to start with self (Pistorius, 2000) and to engage in critical reflection about his or her approach to home-based care work. Perhaps care workers (like me) should not be so eager to help others and health organisations and look critically at the approach they are supporting. To my understanding, health care professionals, together with the Department of Health, non-governmental organisations and churches in poor communities in South Africa had recently taken a community-based approach to HIV/AIDS care and prevention. This approach rests on the assumptions that: Terminally ill people can be treated in the community - at home or in a hospice - and by volunteer workers who are community members Ideally, people prefer to die at home or in their community, maintaining personal dignity and contact with loved ones Community members can be trained to deliver community education, peer counselling and home-based care The HIV/AIDS epidemic will be curbed through community members� active involvement in treatment and prevention efforts Community-base care, primary health care and prevention are programmes that many of us fought for as part of our struggle for an equitable and community participatory health care system during the 1980s. Hence, it is understandable that we should rejoice that government together with community and professional players would embrace this approach. However, from my debriefing experience it is clear that home-base care not only poses gains, but also some serious emotional and financial costs. One would suppose that these costs were unexpected and that voluntary care workers engage and persevere in their work because they believe that home-based care could help them achieve the democratic health care system we all had in mind? What are the dynamics around voluntarism and home-based care in poor and developing communities? I found a fair amount of literature on voluntarism as a positive institution in society and how to be a good leader of voluntary workers (Cf. Voluntas. International Journal of Voluntary and Nonprofit Organizations; Nonprofit and Voluntary Sector Quarterly; and, Internet Nonprofit Center). There is a growing recognition of the importance of social capital in maintaining a healthy and vibrant civil society. Volunteering is viewed as a core component of social capital (Onyx & Leonard, 2002). In terms of my search, volunteer workers should benefit from an appreciative inquiry and the building of organisational skills. Perhaps my home-based care worker organisations and government are disorganised. I could however not find any reports on home-based care for the terminally ill that shows that the writer attempted to: (a) reflect in public on the difficulties that voluntary AIDS care workers experience, and (b) search for ways to deal with the challenges that care workers are faced with, e.g. care and support of the care worker. The few project reports that I had come across about this approach, were mostly presented in newspapers and newsletters. Some examples include: A report in the Sunday Times, August 25 2002, "They brought me back from death. Programme involved in row over UN funding takes the load off hospitals by treating HIV-positive people as outpatients" by Mawande Jubasi. During May 2002, Hospice Care Plus, Kentucky, received the innovation of the week, from The Peter F. Drucker Foundation for Nonprofit Management, for expanding hospice care to terminally ill patients who wish to remain at home while also offering individuals the opportunity to develop marketable skills (<http://drucker.org/innovation/innov-of-week/>). These care workers were paid by the family for their home care work, which included cleaning the patient�s room and doing house sitting. I also attended the African Conference on the Social Aspects of HIV/AIDS Research (SAHARA), organised by the Human Science Research Council, 1-4 September 2002 and was impressed that there were various presentations about home-based care projects (Cf. Modiba, 2002; Williams, 2002; Mundeta & Gomo, 2002;). These presentations however confirmed my concern that presenters mainly talked about their positive achievements. Only one presenter (Williams, 2002) highlighted that they were planning to study the impact that home-based care work has on youth care workers and that for their support they had tried to link youth care workers up with older care groups. The above-mentioned reports offered the following perceptions about the gains for different players from community and home-based care: Governmental clinics and hospitals can keep patient admissions down. The costs of health services and hospitalisations will be lowered. Community members who become volunteer workers gain skills and contacts that will make them employable. Volunteer workers are trained and recognised by reputable community and government organisations. Volunteer workers gain a sense of meaning and respect through their altruistic offering of community services. The terminally ill and their families can gain support for themselves and their family from volunteers whom they can respect and trust as of good reputation. HIV-positive people can secure support, for themselves and their family members, by offering their voluntary services to AIDS service organizations. Some of the SAHARA presentations had shed some light on my "debriefing experience". A presentation by Swartz (2002), on "The impact of local government HIV/AIDS programmes in South Africa", showed that home-based care projects are from amongst the most popular HIV/AIDS projects that community members embark on nowadays. Another enlightening presentation was by Mabetoa (2002), the HIV/AIDS director of the Department of Social Development, who gave a critical analysis on "The social impact of HIV/AIDS and the growing demand for social development services". She highlighted that although there was a growing demand for social development services at local community level, this were yet to be incorporated into HIV/AIDS programmes. HIV/AIDS programmes often focus on physical aspects, she said. The "Integrated Community Based Care and Support Model" is "an ideal situation and making it work has many challenges". Perhaps then, because it is a new approach, participants tend to emphasise positive gains, letting "negativities" remain in the background. What I had found helpful though, was to contrast how stories of home-based care work differed to my "debriefing experience". For example, the Red Cross in Southern Africa (Mundeta, 2002) had strong organisational resources - such as being international and successful in terms of funding - and had provided incentives and recognition for volunteers. These incentives include, an allowance, a bicycle, a uniform, food parcels for the volunteer as well as for patients, support groups, and networking conferences for volunteers. Furthermore, Vicky Timm, who made a presentation on "Being a hospice worker: Jay�s story", at the Critical Methods Conference, showed that her hospice worker was basically happy. His story contrasted with my care worker experiences - Jay�s hospice organisation had provided him an allowance, had support groups for care workers, and Jay did not have to grapple with challenges such as not having access to piped water, electricity, ambulances, social workers, medical services, being unemployed, etc. It is tough to work in a poor community. I urge anyone to try to do in a poor community what they are doing successfully in an affluent community. Health care is more expensive in poor communities; it is more expensive to maintain your health when you have no access to water and electricity. From my "debriefing experience, it seems that government and NGO health care organisations tighten their belts, and the volunteer workers pay the costs. Is that fair? Is that sustainable? As one Critical Methods Conference participant pointed out, their volunteer organisation collapsed because members were expected to use and offer their own resources to carry organisational activities. This confirm my suspicion that volunteers tend to be eager to help others, and support popular ideas, only to be abused by dominant individuals or the system. Unemployed voluntary care workers seem particularly at risk of being subjugated to the dominant ideas and perceptions that their programme planners hold. Thus, structural inequalities in their community and workplace are being maintained under the ideological banner of "community-based health care" and "democracy". Care workers may thus (tend to) become the victims of, and fall prey to, the community-based care programmes that are instituted by those in power. To turn an oppressive system around, care workers should be assisted to have "the knowledge, skills, values and attitudes to question, understand, interrogate and eventually act as change agents of structural inequalities in their place of employment" (Giroux, 1988, as cited on Critical Methods web page). Government officials, professionals and NGO managers should question whether their application of a new approach to things do not maintain the status quo (i.e. inequality), and do not make matters worse for others. It could also be helpful to reflect critically: Why do we expect home-based care work to be voluntary? Does voluntary work mean "no pay", or, a "not-for-profit" payment? Why is it that most home-based care workers are female? Do we expect from them to clean people�s rooms and to clean their wounds for free, because they are women? HIV/AIDS programme planners should thus take care of the values and psychosocial aspects underlying their approach and include care of the care worker into their budgets. What should be done? How should participants of home-base care take care of their approach and care of care workers? It could be helpful if all of role players engage in a process of critical self-reflection and share their reflections collectively. By starting with self, participants take cognisance of their personal tendencies and how this may interfere with their progress. Such a process may make it less likely that participants engage in blaming or defensive interaction, perpetuating a struggle approach to life. A sharing of reflections, including our stories of experiential learning and trial and error, are bound to lead to positive responses from others. Take for example the food parcels that home-based care workers can get for their clients from the Department of Welfare nowadays. One of the aspects of the debriefing sessions that the care workers valued most was that they could share their experiences and self-reflections with people outside their usual circle of contacts. My reflections were furthermore aided when I could share, and contrast, my experience with others elsewhere and during the Critical Methods Conference. It is through noticing how our experiences and contexts differ, that I can see a bigger picture. For now, I believe that we can create knowledge both individually and collectively through an appreciation of difference in Bateson�s sense - knowledge is information that makes a difference (Cf. Bateson, 1972, 1979). Cherishing one�s own and other people�s information (their difference and creativity), may offer an alternative and also more resourceful and socially responsible way of dealing with home-based care. References Bateson, G. (1972). Steps to an ecology of mind. New York: Jason Aronson. Bateson, G. (1979). Mind and nature. New York: Dutton. Buijs, G.J. (2002, July). Sources of Inspiration: Toward a Comparative Perspective on Why People Get Involved in the Third Sector. Paper presented at the International Society for Third-sector Research Fifth International Conference, Transforming Civil Society, Citizenship and Governance: The Third Sector in an Era of Global (Dis)order, Cape Town, South Africa. DJ, (2002, September). Comments on abstract. Voluntary HIV/AIDS home-based care work traps = a predatory health care system? Presented on 8th^{Qualitative virtual Critical Methods Conference, Something for Nothing: Subjectivity and society in the New Economy, Centre for Applied Psychology, University of South Africa, Pretoria.} Dutton, V. M. (2002, September). Subjects of Development. Abstract presented on 8th Qualitative virtual Critical Methods Conference, Something for Nothing: Subjectivity and society in the New Economy, Centre for Applied Psychology, University of South Africa, Pretoria. Giroux, H. (1988). The transformative intellectual. Cited on the 8th Qualitative virtual Critical Methods Conference, Something for Nothing: Subjectivity and society in the New Economy, Centre for Applied Psychology, University of South Africa, Pretoria. Hall, B.L. (1992). From margins to center? The development and purpose of participatory research. American Sociologist, 23(4), 15-28. Hospice Care Plus (2002, May). The Companion Program. Cited on The Peter F. Drucker Foundation for Nonprofit Management, Drucker Nonprofit Innovation Discovery Site, <http://drucker.org/innovation/innov-of-week/> and http://pfdf.org/innovation/innovation/innovation.asp?innov-id=159. Internet Nonprofit Center, Infromation for and about nonprofits, http://www.nonprofits.org/ William, K. (2002, September). Comments on abstract. Voluntary HIV/AIDS home-based care work traps = a predatory health care system? Presented on 8th Qualitative virtual Critical Methods Conference, Something for Nothing: Subjectivity and society in the New Economy, Centre for Applied Psychology, University of South Africa, Pretoria. Mabetoa, M. (2002, September). The social impact of HIV/AIDS and the growing demand for social development services. Paper presented at the African Conference on the Social Aspects of HIV/AIDS Research (SAHARA), Human Science Research Council, Pretoria. Jubasi, M. (2002, August 25) They brought me back from death. Programme involved in row over UN funding takes the load off hospitals by treating HIV-positive people as outpatients. Report in Sunday Times, p.13, South Africa. McLaren, P. (1995). Cultural Pedagogy and Predatory Culture. Book cited on the 8th Qualitative virtual Critical Methods Conference, Something for Nothing: Subjectivity and society in the New Economy, Centre for Applied Psychology, University of South Africa, Pretoria. Modiba, P. (2002, September). The integration of HIV/AIDS Care and Support into primary health care in Gauteng Province (South Africa). Paper presented at the African Conference on the Social Aspects of HIV/AIDS Research (SAHARA), Human Science Research Council, Pretoria. Mundeta, B. & Gomo, E. (2002, September). Red Cross Societies and HIV/AIDS: Southern African experiences and plans in prevention and care. Paper presented at the African Conference on the Social Aspects of HIV/AIDS Research (SAHARA), Human Science Research Council, Pretoria. Nonprofit and Voluntary Sector Quarterly, Sage Publications, Inc. Onyx, J. & Leonard, R. (2002, July). The relationship between formal and informal volunteering: A social capital framework. Paper presented at the International Society for Third-sector Research Fifth International Conference, Transforming Civil Society, Citizenship and Governance: The Third Sector in an Era of Global (Dis)order, Cape Town, South Africa. Pistorius, A.G. (2000). Participatory community development - a networking approach. Unpublished doctoral thesis, University of South Africa, Pretoria Swartz, L. (2002, September). The impact of local government HIV/AIDS programmes in South Africa. Paper presented at the African Conference on the Social Aspects of HIV/AIDS Research (SAHARA), Human Science Research Council, Pretoria. Timm, V. (2002, September). Being a hospice worker: Jay�s story. Paper presented on 8th Qualitative virtual Critical Methods Conference, Something for Nothing: Subjectivity and society in the New Economy, Centre for Applied Psychology, University of South Africa, Pretoria. Voluntas, International Journal of Voluntary and Nonprofit Organizations, http:// www. Istr.org/pubs/voluntas/ Williams, E. (2002, September). Increasing access to care and support for PLHA: Building the capacity of youth caregivers in rural Zambia. Paper presented at the African Conference on the Social Aspects of HIV/AIDS Research (SAHARA), Human Science Research Council, Pretoria.
	Peer reviews of this paper appear below.
	Review 1 Dear Annalie This is the first time that I engaged in a virutal review environment. Maybe my comments and suggestions are not applicable, but I would like to learn from you and the process. I read about three stories in your article. The first story is about the volunteers, the second about the process of involvement and the third story is your voice about your experiences as well as a reflection on the process. These three story lines are sometimes more visible than others. I would have appreciated a clearer description of your own story. In your abstract I wondered by whom the debriefing sessions were requested? What is the meaning of "a developmental orientation"? What was the "model for care worker self-development"? A richer dscirption of the contexts in which the care workers worked would have been helpful to understand the issues that they deal with. And I assume they were all women? Where they? Can I read "action learning" and "experiential learning" as describing the same concept? How did the group decide what topics to discuss? You said that the aim according to you was that they hand an opportunity to talk about their frustrations and traumatic experiences. I also saw something of a commitment and perseverance in the whole process. One of the issues that I also noted in the care workers verbal transcripts was guilt feelings. I wondered how that contributed to their involvement in the caring for others and how it played into the dynamics of exploitation. How were the themes determined that you discussed as commen themes pertinent to voluntary care work police and funding? And I was wondering about the emotional "cost" involved? Kind regards Vera Roos
	Review 2
	Author reply Dear Vera, Thank you for your helpful comments. I made some clarifying changes in the text. Kind regards Annalie

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Action learning and reflection with HIV/AIDS home-based care workers in Gauteng
8th Annual Qualitative/Critical Methods Conference - Critical Methods Society

Something for nothing

	Paper presented at the 8th Annual Qualitative Methods Conference: "Something for nothing" 1 May to 30 September 2002 (http://criticalmethods.org/p105.mv)
	Voluntary HIV/AIDS home-based care work traps = A predatory health care system? Annalie G. Pistorius Contact e-mail: [email protected] Affiliation: Department of Psychology, Medical University of Southern Africa
	Last year, I had engaged voluntary home-based care workers and HIV/AIDS peer counsellors in small group discussions, using action learning and encouraging each to keep a personal journal on their care work experiences. The need for the "debriefing of traumatised" home-based care workers was identified by a peer support training organisation together with a managing governmental official, HIV/AIDS counsellors, home-based care workers and their community organisations in Tshwane, South Africa. When the government official requested me to do "debriefing sessions" with the home-based care workers, and offered payment thereof, I was impressed about their serious attending to the care worker�s personal and community development challenges. At commencement of the sessions, I was also moved with the great number of volunteers, many but not all of them HIV-positive, mostly women, many mobilised by members of the health department and community groups in support of people living with HIV/AIDS and dying at home. I thought: "something positive is happening - community organisations are being sponsored to train community volunteers in peer counselling and home-based care". The voluntary workers opened up very easily and offered many personal stories about their home-based care experiences that made them feel traumatised and powerless. I was hoping to assume a developmental orientation, promoting more than mere crisis intervention. I managed to give the counsellors and care workers an opportunity to reflect on and share experiences related to an appreciation of their services, eg what motivated them to do this kind of work, their personal tendencies and how they dealt creatively with problems. They also voiced common dilemmas pertinent to policy-making and funding. Common themes included: being in the front line and having to deal with all the needs of the patient/client; the lack of multi-sectoral and inter-departmental co-operation; voluntarism requires incentives and material support; and, care givers are not always given the recognition they deserve, yet they are being co-opted for the selfish needs of the health sector. We also explored a model for care worker self-development, which entailed balancing power and control issues with facilitating information flow and creativity. My sessions were however stopped halfway through by the manager of the organisation that had arranged them. He informed me: "government decided to stop funding of small organisations". I responded by calling all participants together into a final session, pulling together their common themes and frustrations into a collective feedback report to the AIDS directorate of government. I thought that a shift to facilitating information flow would render a response, only to find that our government contact persons claimed that they had not received our report. Moreover, I was informed that it was the said organising NGO who's sponsorship was stopped, that government never requested "debriefing sessions", that we should not consult "the wrong officials", etc. I could not help feeling somewhat mislead and paranoid. What happened seemed to me a repetition of my story that I tended to be eager to help others, only to be abused by individuals or the system. The virtual conference page on "Something for Nothing" also encourage me now to wonder about the costs and gains of voluntary work for each participant involved - the client of the home-based care worker, the volunteer, the NGO management, government, professionals � Are we building a "predatory (health care) culture" of "stalkers and victims"? (McLaren, 1995). What kind of traps do we set?
	Introduction In this paper I present the experience I had with the debriefing of voluntary home-based care workers and HIV/AIDS peer counsellors in and around Tshwane (Pretoria) during 2001. I reflect on what proceeded when the sessions were stopped by the managing organisation when their governmental funding ended. I include extracts from the diary entries and inputs that the care workers had offered me concerning their experiences of home-based care, which we provided in a feedback report to the Gauteng HIV/AIDS Directorate of the Department of Health. I theorise on how different players (like me) might tend to be eager to help others while being uncritical of how our support of a new approach may make matters worse. I also include the responses I gained from others and during the Critical Methods Conference, searching for ways on how to turn the problem around. I finally offer some ideas on how participants of the home-based care approach could take care of themselves and care workers. Debriefing voluntary home-based care workers Last year, I had engaged voluntary home-based care workers and HIV/AIDS peer counsellors in small group discussions, using action learning and encouraging each to keep a personal journal on their care work experiences. The need for the "debriefing of traumatised" home-based care workers was identified by a peer support training organisation together with a managing governmental official, HIV/AIDS counsellors, home-based care workers and their community organisations in Tshwane, South Africa. When the government official requested me to do "debriefing sessions" with the home-based care workers, and offered payment thereof, I was impressed about their serious attending to the care worker�s personal and community development challenges. At commencement of the sessions, I was also moved with the great number of volunteers, many but not all of them HIV-positive, mostly women, many mobilised by members of the health department and community groups in support of people living with HIV/AIDS and dying at home. I thought: "something positive is happening - community organisations are being sponsored to train community volunteers in peer counselling and home-based care". The request for the "debriefing sessions" and offers of payment thereof also indicated their serious attending to the care worker�s personal and community development challenges. The training organisation (whom I will refer to as the Training Network, T-Net) served 18 CBOs in and around Thswane in Gauteng (including Hammanskraal and Cullinan). (T-Net is a pseudonym. I have used pseudonyms whenever the identities of individuals or organisations are at stake). The care workers and their organisations were based in poor and low to middle class communities in the townships and informal settlements around Pretoria. As these organisations were mostly small and developing and no fees were charged by T-Net for its services. Instead, the Gauteng HIV/AIDS Directorate provided T-Net funding to sponsor a manager�s salary, and the training sessions on home-based care, peer counselling and mentoring. The organisation impressed me with their networking approach to achieving their objectives. It had one manager (and a committee) who contracted independent professionals to carry out their training tasks. I understood that debriefing in the context of home based care and HIV/AIDS counselling entailed the aim to provide counsellors and care workers an opportunity to talk about their frustrations and traumatic experiences, ventilate emotions, and to consolidate these into an appreciative understanding. I also wanted to introduce a further aim, which was to prepare each care worker to reflect on his or her helping practices, to share their reflections with others and through collaborative reflection to generate some ideas on how to deal creatively with their problems and resources. I was hoping to engage my participants in a process of self-reflection and experiential learning, assuming a developmental orientation. The manager of T-Net and I started off with a meeting which all the care workers from the different client organisations attended, to discuss the need that was expressed for debriefing as well as the practicalities thereof. During this meeting, the care workers impressed me with their noble intentions and enthusiasm about home-based care work. I was impressed with their dedication to serve patients at home in return for nothing at all. Many of them expressed how their voluntary community work had given them a sense of meaning and purpose, because they were unemployed and feeling useless. Some of them just recently learned that they are HIV-positive. On exploring the need for debriefing, I found only a few care workers who felt traumatised by the way someone died. Most of the care workers� need for debriefing, centred on feelings of powerlessness and a lack of care worker support. "The policy of Department of Health is that we care and support the people at home as hospitals are full with few available beds. Many home care workers were mobilised by nurses and work hand-in-hand with them to help take care of patients at home and distribute their tablets. Hospitals are full and we have to care and support people at home. We are committed to do our work in the community voluntarily and the people we serve have no food. However, when we visit the homes of our patients, we are faced with no travelling allowance and no material support to assist our duties or the needs of our patients, such as dealing with the lack of ambulance services. Further, clinics and hospitals have become short staffed and many nurses have left the country. Care givers are thus expected to do more - filling in for the nurse." We all agreed that there was an urgent need for the debriefing sessions. I introduced them to action learning and collaborative action research. I requested them to each keep a personal diary in which they would describe problematic events and reflect on how they managed them. They were to share their notes in small group context and talk about their problem solving ideas. Where possible, each group would comprise of members from different organisations. The idea was that care workers would have the opportunity to exchange ideas with care workers elsewhere. Hopefully, from such a broader sharing of ideas new insights would also be generated. Subsequent to the first meeting, four groups of approximately 8 care workers per group engaged bi-monthly in debriefing sessions. The idea was that another round of four groups would follow thereafter, and so on for others. Participants were encouraged to keep personal diaries in their vernacular and translations were done during group sessions. During group discussions I aimed at attending to their personal style and organisational resources that related to their problem solving. The care workers were also encouraged to identify common themes and share creative ideas on ways to manage problems. The care workers� responses to my requests were surprisingly positive. Most of them impressed me with how dedicated they were at keeping their diaries and case notes. Keeping a diary made sense to them. As one care worker had put it: "Keeping a diary works well for problems solving, because you have to pause a bit and reflect on what you do from a distance. This gives you a chance to think critically about what you are going to do next, and not just going ahead and becoming overwhelmed by what happens". The care workers also seemed to enjoy opening up and comparing their experiences with care workers from other communities. The manager of T-Net had planned four sessions for the first four groups over a period of two months. However, the sessions were stopped halfway through, after they had engaged in two or three sessions, because T-Net�s governmental funding was stopped. The T-Net manager informed me: "government decided to stop funding small organisations". The funding policy of government had apparently shifted to the channelling of grants to organisations that have the capacity to manage large amounts of funds. This raised concern for the livelihood of small and developing organisations and the effectiveness of channelling their funding under the auspices of bigger organisations and consortia. Another concern was that a once-off seed fund for small, and developing Non-Profit Organisations (NPOs) were problematic for their survival. Social policymaking that showed concern for HIV/AIDS community workers and their developing organisations seemed critical. I responded by calling all participants together in a final session. Through group work, we identified common themes and stories from their diaries, my notes from sessions and our group discussion. Hence, participants and I pulled together their common themes and frustrations into a collective feedback report to the Gauteng AIDS Directorate of the Department of Health. The specific aims of this report were to: "(a) give voice to the problems that HIV/AIDS community workers and their organisations experience in the course of their community services; (b) promote an appreciation of the valuable social capital that South Africa enjoys in the field of HIV/AIDS community-based health and welfare services, by community workers in co-operation with government; and (c) give information that was pertinent to policy making and funding arrangements of government". We also requested a response from the HIV/AIDS Directorate on our report, and about policy and funding plans concerning HIV/AIDS workers and their organisations. What follows are extracts from our report, including my notes and diary inputs from the care workers. The report dealt with the home-based care workers� resources, motivation, experiences and problems, and common themes pertinent to voluntary care worker policy and funding. The care workers and their managing committees gave their permission that their inputs are included in reports to government, professionals and the public. *Organisational Resources and Social Capital* "EACH in Eersterust was started 10 years ago by clinic sisters and community members. We did a research and identified cancer and psychiatric patients as in need. We started support groups with the clients and families. Spare rooms at the clinic were given to the organisation cost free. Our activities were done with the assistance of the sister in charge at the clinic, nurses and the occupational therapist from the University of Pretoria. We have twelve volunteers. We have different support groups from Monday to Thursday for patients with stroke, disabilities, arthritis, cancer, HIV/AIDS and psychiatry. In the afternoon after each group, the sister goes out with the volunteers to visit the sick. We started home-based care funded by the Department of Health in 2000. We have five home caregivers who were trained. They serve patients with stroke, TB, cancer, diabetes, mental health and AIDS. When their patients die, they prepare the family and assist them through the process. We are in the process of erecting a Hospice Respite Centre, co-funded by the Japanese Embassy. We do fund rising three times a year for different projects". "Kopano ke Maatla (Atteridgeville) was started in 1999. We are 35 caregivers. We do home based care for patients with stroke HIV/AIDS and are Dots supporters for TB patients. We see 3 to 5 patients each per week, and do visits three to four times per week. We support 6-10 TB patients per day. We do it because we have something to do, can share with them and care for them". "The Institute for Primary Health (Soshanguve) was established in 1994. The organisation is registered under section 21 and the NPO Welfare act. They have four full time staff, 10 full time volunteers who receive R 500 per month incentive from the Department of Health. There is a further 20 volunteer support group. The organisation also has a management committee and a board of directors. Activities include home based care, school talks, counselling, radio talk shows, church outreach and a youth programme". "Thembelisha (Mamelodi) has 20 caregivers. Church members of the Apostic Faith Mission started this project in February 2000. Their aim is to help people who are terminally ill and who are living alone and dying with no one to look after. As a church organisation a lot of people bring problems at church and we realised that there is a need to help the community, which is suffering from HIV/AIDS and related diseases. Initially, we did not have anything, e.g. medicine, gloves and money for transport to go door-to-door visiting our patients. The church now gives us Sunday offerings to help for transport. We are operating in Stanza Bopape and around Nellmapius. We are being helped by our local clinics in Stanza I and II. It is our spirituality that makes us keep on going - we do it for the love and moral support we can give others". Volunteer workers do not have full time employment and are often not employed at all. Some of them sell fat cakes, do food gardens, work at cash loans, make beads, depend on their husbands or parents, do piece jobs or knit jerseys. Many volunteers were recruited by retired sisters or sisters at clinics from the Department of Health. Some initiated their organisations from their churches, and belong to burial societies or church groups. "Thusong Health Project in Pretoria offers services to sex workers. Some sex workers want to change their job. We are now working on establishing a job creation project for them, starting with dressmaking". *Having to cater for all needs of the patient and family* �The problem is that your patients become fully dependent on you. On your visit you find that they do not have food, and they can�t take the medication you bring them without food. Even when their condition is such that they need to see a doctor, their family has no money for transport. They live in conditions where there is no piped water, and you have to carry many buckets of water into their room so that you can wash them. You also leave sufficient buckets of water in their room so that a family member can wash them for the two days that you will not be visiting. On the third day you however find that no-one washed the patient." "Although you have explained to your patient and the family about how home based care work, they are waiting for you as their saviour. You wonder now, how should you influence the family?" "Most of us have five patients whom we visit three times during the week. The family however calls us over weekends to attend to a crisis and to do the patients� dressing". "One of my patients once asked me for money to buy some fruit on his way to the hospital but I refused. Thereafter I felt so guilty that I bought a bag of oranges and sent it after him to hospital". "It is difficult to decide when to give and when not and dealing with your guilt. There is this bible story about the women who refused to help this stranger who asked for help, because she was waiting for Jesus to come to her door. But thereafter she found that the stranger whom she rejected was Jesus". "There was this one patient of ours who lay dead in her bed for three days, her baby still sucking and the husband was just sitting there drinking. This made me feel disturbed". "Another patient�s bedsores were that septic that the room had a smell. When I went to see my doctor, I cried and wanted him to wash the smell from my face". "The husband says �you stole my wife� when you refer her to a hospice. The husband is not dealing with the illness." "Our patients are the poorest of the poor, they give use many complaints and always wants something to eat. With no support from elsewhere, it now looks like it is your burden. The Health Department should support home caregivers and not leave them empty-handed. They should give us food parcels to hand out". "Hospitals dump dying patients on you and the care giver is being accused when the patient is worse. Caregivers get burnout and frustrations because families are not helpful and start to blame care givers if something happen to their sick person. They load all their problems on the caregiver especially after the death of the patient". "At times when I find my patient being angry and the family is also angry with him, I feel trapped between them not knowing what to do - how do I create a peaceful environment, how do I deal with powerlessness and anger?" "The patients that are referred to us are critical. Often their families abandon them and the hospital does not treat them - they are now dependant on the home care giver." "We have problems that we don�t know how to solve, like transport for patients and money for it. We go from pillar to post to get someone to offer a car, an ambulance and a donation to pay for the petrol. We are too few - we cannot reach everyone. If policy makers could see how organisations are struggling, do a research of organisations. People down here, their organisations have nothing. People up there should see and touch links down here. We should get a push, moral support. It is dark down here - someone should give light. We need support, even our youth". *The disabled* "Many of the families that we care for have problems with disabled members at home. For example, this one granny is taking care of her daughter�s child who is mentally disabled. She cannot send him to special school because she says she has no money for school fees. She says the Social welfare cannot help her, and she cannot remember with whom she talked. When I asked her out about her problem to get the child�s disability fund, it came out that the child does not have a birth certificate, and the mother in Johannesburg does not cooperate, and the social worker here does not do home visits." "There are no wheel chairs for people with stroke". *Dealing with denial* "People move around, especially after they had tested HIV positive. They cannot face their families and their friends reject them". "There is this one youth that just sits with his head in his hands. When I try and talk to him he chases me away". "My one client is HIV positive, but she does not tell her husband". "This year I buried four girls from one boyfriend. It is difficult to deal with denial, one way that works is to just keep on giving information and to make sure that people know where to get help and support". *Recognition and support from nurses, doctors and social workers - some successes and some let downs* "We as care givers, are committed to do our work in the community voluntarily and the people we serve have no food. The policy of DOH is that we care and support the people at home as hospitals are full with few available beds. However, when we visit the homes of our patients, we are faced with no travelling allowance and no material support to assist our duties or the needs of our patients". "Nurses ignore us when we want to assist them. Some even use abusive language that makes us angry. We even feel like giving up because we are not getting any incentives for doing the work we are doing voluntarily". "Some doctors are supportive and even treat our patients for free as long as the caregiver is present". "Social workers are problematic - they always have an excuse that they have no transport to visit patients. So the caregivers are pressurised to do something for the patients and have to pressurise social workers to do something". "Our caregivers always ask about vacant houses that could be used for home care or hospice. With their efforts we will in future run our own hospice in Soshanguve. Already, Legae Clinic donated 20 beds and a 13-roomed house has been given to us. We are just waiting for the finalisation of papers". "Our caregivers care for all patients with all their sicknesses at home. They thus underwent a three-day DOTS workshop at Tlamelong Clinic. 20 caregivers in 2 groups attended the workshop. No transport funds were provided. They were however grateful of the training opportunity provided to them". "We believe that networking and partnership with all stakeholders are important. So caregivers are taking initiative to introduce themselves so as to get moral support and donations, to be able to help those in need." "Another problem with social workers is that they are absent in new settlement areas - they quit to work in the city". "A big problem is that in some of our areas the social workers and clinic sisters do not recognise our counsellors, even though they received training through T-Net. The Department of Health should introduce them to the clinics". *Hospices, orphanages and child headed families* "There are few hospices and many orphans are left to fend for themselves and turn to the street". "One AIDS patient died and lefts four kids, who were taken to their uncle. The second-born did not get along with him and stayed at the shack. She got raped, but runs away when I approach her". "Some children are left alone, no one to support them with food and everything they want. Children no longer go to school. Some orphans do not have birth certificates and if we want to help them to get some grants this becomes a problem. There is also a problem for those who are from 7 years and up - they are not allowed to get any grant". *Voluntarism and incentives* "Some of us get incentives such as a transport allowance, R 500 for voluntary work and a diploma in Home Based Care and peer counselling." *Co-optation of People Living With AIDS who serve as care givers and HIV/AIDS counsellors* "We, as the Success Support Group don�t have the resources to take care of our family and taking care of our People With AIDS (PWAs). Our group does counselling and awareness raising, home and hospital visits and exhibitions. And the most important thing is SUPPORT - PWAs need moral support. As the Success Support Group, we have a big big problem about people wanting to make money through us PWAs. For instance, an individual started a project for PWAs through F-Company, S and Child Welfare. While he was looking forward to satisfy his needs and to use PWAs, we gained nothing even though we were bribed by his offer to give our children money for school and pre-school. Many people advised us that we must be careful of him and that he was no longer working at S but still used the name of F-Company. Another example is M-Hospice who gets food donations from W for PWAs while PWAs get nothing. The Success Group is trained to do counselling but while M-Training do accommodate us with office space, they do not provide for the use of other facilities such as telephone and fax. Worst of all, they ignore us and invite people from outside to do counselling. The other problem is when there is an AIDS awareness event, we volunteer to help them but at the end of the day we are nothing because they don�t even give mention of our names or recognise our group. M-H gain funding from our AIDS status - this, they do by expecting us to disclose our status at short notice to visitors for R 50, we however feel depressed and used thereafter." *Common themes pertinent to voluntary care work policy and funding* The care workers and I highlighted the following themes from their diaries and our collective discussion: Caregivers cater for all needs of the patient and family - social welfare, economic, physical and psychological health Their services are dependent on good linking and co-operation with doctors, sisters, nurses, social workers, psychologists and their organisations Voluntarism requires incentives and material support Care givers do an excellent job in taking care of their patients and providing information to family members to assist them to deal with diseases Hospices and orphanages are lacking and are being developed through government-community organisation The disabled and resources for them require urgent attention Care givers, the role of the community and their organisational structures (eg church groups), are not always given the recognition they deserve, and are often abused and co-opted for the selfish needs of the health professional and the NGO sector Developing organisations, often lacking in resources and ability to secure funding, are not necessarily unskilled or ineffective in the services that they offer to the public. My subsequent progress I thought that an approach of information exchange would facilitate a response from government, only to find that our government contact persons claimed that they had not received our report. Subsequently, the manager of T-Net arranged a meeting with a managing departmental official, and invited some care workers and me to attend. At this meeting I was surprised to learn that it was T-Net�s sponsorship that was stopped, and not all small organisations as I were made to (or had chosen) to believe. The government official, with whom we had a meeting, also informed us that the department never requested "debriefing sessions" for care workers. She however thought that government workers should first be engaged in action learning. She also warned that we were consulting "the wrong officials", and that T-Net should never have received funding because their proposal was weak. I could not help feeling somewhat mislead and paranoid about the situation. What happened seemed to me a repetition of my own story that I tended to be eager to help others, only to let myself to be abused by individuals or the system. Did I get the story wrong from the manager of T-Net? Was the department "full of politics"? I subsequently consoled myself by letting go of worrying about the whole incident - not to become trapped in a power play with others. No one in a development context wants to be told what to do and how to behave. Perhaps, it would help others and myself if I would stay focused on free information exchange. Subsequently, from a meeting with health professions by the AIDS directorate about their HIV/AIDS care programme, it did appear that some of the issues that were raised by our report were receiving attention. My participants and I had voiced our concerns about home-based care and perhaps we were being heard. On a follow-up, some of the home-based care NPOs also informed me that they had started regular meetings where their care workers share and reflect on their work experiences. However, others maintained that they missed that networking they had with care workers from other organisations and wished for a more collaborative form of debriefing. What does my results mean in theory? The virtual conference page on "Something for Nothing" encouraged me to wonder about the costs and gains of voluntary work for each participant involved - the client of the home-based care worker, the volunteer, the NGO management, government, professionals � Are we building a "predatory [health care] culture" of "stalkers and victims"? (McLaren, 1995, as cited in Critical Methods Webpage). (I have placed my additions to quoted texts in brackets). What kind of traps do we set? I agree with Kevin William, who had posted a comment on my abstract, that one should be wary of just blaming "the government". None of us really want to be obstructionist. A blaming approach would also further a power struggle, holding in place behaviours and relationships that were problematic in the first place. We would thus maintain "human development [as] � a unique set of tactics through which power proliferates and extends itself beyond the range of other development strategies" (Vaughan M Dutton, Subjects of Development, virtual Critical Methods Conference). As DJ had highlighted: "Perhaps we are all predators [and victims] - academics, home workers, nurses, dr's, politicians?". The problem of power, voice and the co-option of community members by those dominant for their egotistic needs have been major concerns for participatory researchers in the development context (Hall, 1992). Many discussions on civil society focus on different kind of institutions or associations, their behaviour and the relations between them. Questions have been raised about how the policies of government and international aid policies affect the health care system and the work done by volunteers and community health activists in developing countries. Relatively little attention is however given to the question what actually motivates people to found certain institutions or to get involved in them, e.g. to become an �activist� (Buijs, 2002) or a voluntary care worker. From a constructivist perspective, each community care practitioner has a unique tendency to act (and be trapped) in a certain way. Our tendencies are closely related to the assumptions and myths that we hold about the world and how we should operate upon it. Analysing the care workers� frustration and their diary entries, they appeared to gravitate toward the following tendencies and virtues: Filling in for � Catering for all needs Sympathy Guilt Powerlessness and anger In need of moral support Morality Perseverance Being abused Loving kindness I gather that many of the care workers, like me, tend to get trapped in the moral domain. Perhaps, in our eagerness to help others we compromise ourselves. Our uncritical support of the government�s new home-based care approach (an ideology) puts us at risk of becoming victims of the (our) approach. Thus, each participant, including governmental official, NPO manager, professional and volunteer care worker could find it useful to start with self (Pistorius, 2000) and to engage in critical reflection about his or her approach to home-based care work. Perhaps care workers (like me) should not be so eager to help others and health organisations and look critically at the approach they are supporting. To my understanding, health care professionals, together with the Department of Health, non-governmental organisations and churches in poor communities in South Africa had recently taken a community-based approach to HIV/AIDS care and prevention. This approach rests on the assumptions that: Terminally ill people can be treated in the community - at home or in a hospice - and by volunteer workers who are community members Ideally, people prefer to die at home or in their community, maintaining personal dignity and contact with loved ones Community members can be trained to deliver community education, peer counselling and home-based care The HIV/AIDS epidemic will be curbed through community members� active involvement in treatment and prevention efforts Community-base care, primary health care and prevention are programmes that many of us fought for as part of our struggle for an equitable and community participatory health care system during the 1980s. Hence, it is understandable that we should rejoice that government together with community and professional players would embrace this approach. However, from my debriefing experience it is clear that home-base care not only poses gains, but also some serious emotional and financial costs. One would suppose that these costs were unexpected and that voluntary care workers engage and persevere in their work because they believe that home-based care could help them achieve the democratic health care system we all had in mind? What are the dynamics around voluntarism and home-based care in poor and developing communities? I found a fair amount of literature on voluntarism as a positive institution in society and how to be a good leader of voluntary workers (Cf. Voluntas. International Journal of Voluntary and Nonprofit Organizations; Nonprofit and Voluntary Sector Quarterly; and, Internet Nonprofit Center). There is a growing recognition of the importance of social capital in maintaining a healthy and vibrant civil society. Volunteering is viewed as a core component of social capital (Onyx & Leonard, 2002). In terms of my search, volunteer workers should benefit from an appreciative inquiry and the building of organisational skills. Perhaps my home-based care worker organisations and government are disorganised. I could however not find any reports on home-based care for the terminally ill that shows that the writer attempted to: (a) reflect in public on the difficulties that voluntary AIDS care workers experience, and (b) search for ways to deal with the challenges that care workers are faced with, e.g. care and support of the care worker. The few project reports that I had come across about this approach, were mostly presented in newspapers and newsletters. Some examples include: A report in the Sunday Times, August 25 2002, "They brought me back from death. Programme involved in row over UN funding takes the load off hospitals by treating HIV-positive people as outpatients" by Mawande Jubasi. During May 2002, Hospice Care Plus, Kentucky, received the innovation of the week, from The Peter F. Drucker Foundation for Nonprofit Management, for expanding hospice care to terminally ill patients who wish to remain at home while also offering individuals the opportunity to develop marketable skills (<http://drucker.org/innovation/innov-of-week/>). These care workers were paid by the family for their home care work, which included cleaning the patient�s room and doing house sitting. I also attended the African Conference on the Social Aspects of HIV/AIDS Research (SAHARA), organised by the Human Science Research Council, 1-4 September 2002 and was impressed that there were various presentations about home-based care projects (Cf. Modiba, 2002; Williams, 2002; Mundeta & Gomo, 2002;). These presentations however confirmed my concern that presenters mainly talked about their positive achievements. Only one presenter (Williams, 2002) highlighted that they were planning to study the impact that home-based care work has on youth care workers and that for their support they had tried to link youth care workers up with older care groups. The above-mentioned reports offered the following perceptions about the gains for different players from community and home-based care: Governmental clinics and hospitals can keep patient admissions down. The costs of health services and hospitalisations will be lowered. Community members who become volunteer workers gain skills and contacts that will make them employable. Volunteer workers are trained and recognised by reputable community and government organisations. Volunteer workers gain a sense of meaning and respect through their altruistic offering of community services. The terminally ill and their families can gain support for themselves and their family from volunteers whom they can respect and trust as of good reputation. HIV-positive people can secure support, for themselves and their family members, by offering their voluntary services to AIDS service organizations. Some of the SAHARA presentations had shed some light on my "debriefing experience". A presentation by Swartz (2002), on "The impact of local government HIV/AIDS programmes in South Africa", showed that home-based care projects are from amongst the most popular HIV/AIDS projects that community members embark on nowadays. Another enlightening presentation was by Mabetoa (2002), the HIV/AIDS director of the Department of Social Development, who gave a critical analysis on "The social impact of HIV/AIDS and the growing demand for social development services". She highlighted that although there was a growing demand for social development services at local community level, this were yet to be incorporated into HIV/AIDS programmes. HIV/AIDS programmes often focus on physical aspects, she said. The "Integrated Community Based Care and Support Model" is "an ideal situation and making it work has many challenges". Perhaps then, because it is a new approach, participants tend to emphasise positive gains, letting "negativities" remain in the background. What I had found helpful though, was to contrast how stories of home-based care work differed to my "debriefing experience". For example, the Red Cross in Southern Africa (Mundeta, 2002) had strong organisational resources - such as being international and successful in terms of funding - and had provided incentives and recognition for volunteers. These incentives include, an allowance, a bicycle, a uniform, food parcels for the volunteer as well as for patients, support groups, and networking conferences for volunteers. Furthermore, Vicky Timm, who made a presentation on "Being a hospice worker: Jay�s story", at the Critical Methods Conference, showed that her hospice worker was basically happy. His story contrasted with my care worker experiences - Jay�s hospice organisation had provided him an allowance, had support groups for care workers, and Jay did not have to grapple with challenges such as not having access to piped water, electricity, ambulances, social workers, medical services, being unemployed, etc. It is tough to work in a poor community. I urge anyone to try to do in a poor community what they are doing successfully in an affluent community. Health care is more expensive in poor communities; it is more expensive to maintain your health when you have no access to water and electricity. From my "debriefing experience, it seems that government and NGO health care organisations tighten their belts, and the volunteer workers pay the costs. Is that fair? Is that sustainable? As one Critical Methods Conference participant pointed out, their volunteer organisation collapsed because members were expected to use and offer their own resources to carry organisational activities. This confirm my suspicion that volunteers tend to be eager to help others, and support popular ideas, only to be abused by dominant individuals or the system. Unemployed voluntary care workers seem particularly at risk of being subjugated to the dominant ideas and perceptions that their programme planners hold. Thus, structural inequalities in their community and workplace are being maintained under the ideological banner of "community-based health care" and "democracy". Care workers may thus (tend to) become the victims of, and fall prey to, the community-based care programmes that are instituted by those in power. To turn an oppressive system around, care workers should be assisted to have "the knowledge, skills, values and attitudes to question, understand, interrogate and eventually act as change agents of structural inequalities in their place of employment" (Giroux, 1988, as cited on Critical Methods web page). Government officials, professionals and NGO managers should question whether their application of a new approach to things do not maintain the status quo (i.e. inequality), and do not make matters worse for others. It could also be helpful to reflect critically: Why do we expect home-based care work to be voluntary? Does voluntary work mean "no pay", or, a "not-for-profit" payment? Why is it that most home-based care workers are female? Do we expect from them to clean people�s rooms and to clean their wounds for free, because they are women? HIV/AIDS programme planners should thus take care of the values and psychosocial aspects underlying their approach and include care of the care worker into their budgets. What should be done? How should participants of home-base care take care of their approach and care of care workers? It could be helpful if all of role players engage in a process of critical self-reflection and share their reflections collectively. By starting with self, participants take cognisance of their personal tendencies and how this may interfere with their progress. Such a process may make it less likely that participants engage in blaming or defensive interaction, perpetuating a struggle approach to life. A sharing of reflections, including our stories of experiential learning and trial and error, are bound to lead to positive responses from others. Take for example the food parcels that home-based care workers can get for their clients from the Department of Welfare nowadays. One of the aspects of the debriefing sessions that the care workers valued most was that they could share their experiences and self-reflections with people outside their usual circle of contacts. My reflections were furthermore aided when I could share, and contrast, my experience with others elsewhere and during the Critical Methods Conference. It is through noticing how our experiences and contexts differ, that I can see a bigger picture. For now, I believe that we can create knowledge both individually and collectively through an appreciation of difference in Bateson�s sense - knowledge is information that makes a difference (Cf. Bateson, 1972, 1979). Cherishing one�s own and other people�s information (their difference and creativity), may offer an alternative and also more resourceful and socially responsible way of dealing with home-based care. References Bateson, G. (1972). Steps to an ecology of mind. New York: Jason Aronson. Bateson, G. (1979). Mind and nature. New York: Dutton. Buijs, G.J. (2002, July). Sources of Inspiration: Toward a Comparative Perspective on Why People Get Involved in the Third Sector. Paper presented at the International Society for Third-sector Research Fifth International Conference, Transforming Civil Society, Citizenship and Governance: The Third Sector in an Era of Global (Dis)order, Cape Town, South Africa. DJ, (2002, September). Comments on abstract. Voluntary HIV/AIDS home-based care work traps = a predatory health care system? Presented on 8th^{Qualitative virtual Critical Methods Conference, Something for Nothing: Subjectivity and society in the New Economy, Centre for Applied Psychology, University of South Africa, Pretoria.} Dutton, V. M. (2002, September). Subjects of Development. Abstract presented on 8th Qualitative virtual Critical Methods Conference, Something for Nothing: Subjectivity and society in the New Economy, Centre for Applied Psychology, University of South Africa, Pretoria. Giroux, H. (1988). The transformative intellectual. Cited on the 8th Qualitative virtual Critical Methods Conference, Something for Nothing: Subjectivity and society in the New Economy, Centre for Applied Psychology, University of South Africa, Pretoria. Hall, B.L. (1992). From margins to center? The development and purpose of participatory research. American Sociologist, 23(4), 15-28. Hospice Care Plus (2002, May). The Companion Program. Cited on The Peter F. Drucker Foundation for Nonprofit Management, Drucker Nonprofit Innovation Discovery Site, <http://drucker.org/innovation/innov-of-week/> and http://pfdf.org/innovation/innovation/innovation.asp?innov-id=159. Internet Nonprofit Center, Infromation for and about nonprofits, http://www.nonprofits.org/ William, K. (2002, September). Comments on abstract. Voluntary HIV/AIDS home-based care work traps = a predatory health care system? Presented on 8th Qualitative virtual Critical Methods Conference, Something for Nothing: Subjectivity and society in the New Economy, Centre for Applied Psychology, University of South Africa, Pretoria. Mabetoa, M. (2002, September). The social impact of HIV/AIDS and the growing demand for social development services. Paper presented at the African Conference on the Social Aspects of HIV/AIDS Research (SAHARA), Human Science Research Council, Pretoria. Jubasi, M. (2002, August 25) They brought me back from death. Programme involved in row over UN funding takes the load off hospitals by treating HIV-positive people as outpatients. Report in Sunday Times, p.13, South Africa. McLaren, P. (1995). Cultural Pedagogy and Predatory Culture. Book cited on the 8th Qualitative virtual Critical Methods Conference, Something for Nothing: Subjectivity and society in the New Economy, Centre for Applied Psychology, University of South Africa, Pretoria. Modiba, P. (2002, September). The integration of HIV/AIDS Care and Support into primary health care in Gauteng Province (South Africa). Paper presented at the African Conference on the Social Aspects of HIV/AIDS Research (SAHARA), Human Science Research Council, Pretoria. Mundeta, B. & Gomo, E. (2002, September). Red Cross Societies and HIV/AIDS: Southern African experiences and plans in prevention and care. Paper presented at the African Conference on the Social Aspects of HIV/AIDS Research (SAHARA), Human Science Research Council, Pretoria. Nonprofit and Voluntary Sector Quarterly, Sage Publications, Inc. Onyx, J. & Leonard, R. (2002, July). The relationship between formal and informal volunteering: A social capital framework. Paper presented at the International Society for Third-sector Research Fifth International Conference, Transforming Civil Society, Citizenship and Governance: The Third Sector in an Era of Global (Dis)order, Cape Town, South Africa. Pistorius, A.G. (2000). Participatory community development - a networking approach. Unpublished doctoral thesis, University of South Africa, Pretoria Swartz, L. (2002, September). The impact of local government HIV/AIDS programmes in South Africa. Paper presented at the African Conference on the Social Aspects of HIV/AIDS Research (SAHARA), Human Science Research Council, Pretoria. Timm, V. (2002, September). Being a hospice worker: Jay�s story. Paper presented on 8th Qualitative virtual Critical Methods Conference, Something for Nothing: Subjectivity and society in the New Economy, Centre for Applied Psychology, University of South Africa, Pretoria. Voluntas, International Journal of Voluntary and Nonprofit Organizations, http:// www. Istr.org/pubs/voluntas/ Williams, E. (2002, September). Increasing access to care and support for PLHA: Building the capacity of youth caregivers in rural Zambia. Paper presented at the African Conference on the Social Aspects of HIV/AIDS Research (SAHARA), Human Science Research Council, Pretoria.
	Peer reviews of this paper appear below.
	Review 1 Dear Annalie This is the first time that I engaged in a virutal review environment. Maybe my comments and suggestions are not applicable, but I would like to learn from you and the process. I read about three stories in your article. The first story is about the volunteers, the second about the process of involvement and the third story is your voice about your experiences as well as a reflection on the process. These three story lines are sometimes more visible than others. I would have appreciated a clearer description of your own story. In your abstract I wondered by whom the debriefing sessions were requested? What is the meaning of "a developmental orientation"? What was the "model for care worker self-development"? A richer dscirption of the contexts in which the care workers worked would have been helpful to understand the issues that they deal with. And I assume they were all women? Where they? Can I read "action learning" and "experiential learning" as describing the same concept? How did the group decide what topics to discuss? You said that the aim according to you was that they hand an opportunity to talk about their frustrations and traumatic experiences. I also saw something of a commitment and perseverance in the whole process. One of the issues that I also noted in the care workers verbal transcripts was guilt feelings. I wondered how that contributed to their involvement in the caring for others and how it played into the dynamics of exploitation. How were the themes determined that you discussed as commen themes pertinent to voluntary care work police and funding? And I was wondering about the emotional "cost" involved? Kind regards Vera Roos
	Review 2
	Author reply Dear Vera, Thank you for your helpful comments. I made some clarifying changes in the text. Kind regards Annalie

1 Dec 2004 - -h1-Please check the sites about- Tons of interesdting stuff!!! -/h1-

10 Sep 2002 - would like to know more about care for care givers. Otherwise great ork done - uhiriwe mary

Action learning and reflection with HIV/AIDS home-based care workers in Gauteng
8th Annual Qualitative/Critical Methods Conference - Critical Methods Society

Something for nothing

	Paper presented at the 8th Annual Qualitative Methods Conference: "Something for nothing" 1 May to 30 September 2002 (http://criticalmethods.org/p105.mv)
	Voluntary HIV/AIDS home-based care work traps = A predatory health care system? Annalie G. Pistorius Contact e-mail: [email protected] Affiliation: Department of Psychology, Medical University of Southern Africa
	Last year, I had engaged voluntary home-based care workers and HIV/AIDS peer counsellors in small group discussions, using action learning and encouraging each to keep a personal journal on their care work experiences. The need for the "debriefing of traumatised" home-based care workers was identified by a peer support training organisation together with a managing governmental official, HIV/AIDS counsellors, home-based care workers and their community organisations in Tshwane, South Africa. When the government official requested me to do "debriefing sessions" with the home-based care workers, and offered payment thereof, I was impressed about their serious attending to the care worker�s personal and community development challenges. At commencement of the sessions, I was also moved with the great number of volunteers, many but not all of them HIV-positive, mostly women, many mobilised by members of the health department and community groups in support of people living with HIV/AIDS and dying at home. I thought: "something positive is happening - community organisations are being sponsored to train community volunteers in peer counselling and home-based care". The voluntary workers opened up very easily and offered many personal stories about their home-based care experiences that made them feel traumatised and powerless. I was hoping to assume a developmental orientation, promoting more than mere crisis intervention. I managed to give the counsellors and care workers an opportunity to reflect on and share experiences related to an appreciation of their services, eg what motivated them to do this kind of work, their personal tendencies and how they dealt creatively with problems. They also voiced common dilemmas pertinent to policy-making and funding. Common themes included: being in the front line and having to deal with all the needs of the patient/client; the lack of multi-sectoral and inter-departmental co-operation; voluntarism requires incentives and material support; and, care givers are not always given the recognition they deserve, yet they are being co-opted for the selfish needs of the health sector. We also explored a model for care worker self-development, which entailed balancing power and control issues with facilitating information flow and creativity. My sessions were however stopped halfway through by the manager of the organisation that had arranged them. He informed me: "government decided to stop funding of small organisations". I responded by calling all participants together into a final session, pulling together their common themes and frustrations into a collective feedback report to the AIDS directorate of government. I thought that a shift to facilitating information flow would render a response, only to find that our government contact persons claimed that they had not received our report. Moreover, I was informed that it was the said organising NGO who's sponsorship was stopped, that government never requested "debriefing sessions", that we should not consult "the wrong officials", etc. I could not help feeling somewhat mislead and paranoid. What happened seemed to me a repetition of my story that I tended to be eager to help others, only to be abused by individuals or the system. The virtual conference page on "Something for Nothing" also encourage me now to wonder about the costs and gains of voluntary work for each participant involved - the client of the home-based care worker, the volunteer, the NGO management, government, professionals � Are we building a "predatory (health care) culture" of "stalkers and victims"? (McLaren, 1995). What kind of traps do we set?
	Introduction In this paper I present the experience I had with the debriefing of voluntary home-based care workers and HIV/AIDS peer counsellors in and around Tshwane (Pretoria) during 2001. I reflect on what proceeded when the sessions were stopped by the managing organisation when their governmental funding ended. I include extracts from the diary entries and inputs that the care workers had offered me concerning their experiences of home-based care, which we provided in a feedback report to the Gauteng HIV/AIDS Directorate of the Department of Health. I theorise on how different players (like me) might tend to be eager to help others while being uncritical of how our support of a new approach may make matters worse. I also include the responses I gained from others and during the Critical Methods Conference, searching for ways on how to turn the problem around. I finally offer some ideas on how participants of the home-based care approach could take care of themselves and care workers. Debriefing voluntary home-based care workers Last year, I had engaged voluntary home-based care workers and HIV/AIDS peer counsellors in small group discussions, using action learning and encouraging each to keep a personal journal on their care work experiences. The need for the "debriefing of traumatised" home-based care workers was identified by a peer support training organisation together with a managing governmental official, HIV/AIDS counsellors, home-based care workers and their community organisations in Tshwane, South Africa. When the government official requested me to do "debriefing sessions" with the home-based care workers, and offered payment thereof, I was impressed about their serious attending to the care worker�s personal and community development challenges. At commencement of the sessions, I was also moved with the great number of volunteers, many but not all of them HIV-positive, mostly women, many mobilised by members of the health department and community groups in support of people living with HIV/AIDS and dying at home. I thought: "something positive is happening - community organisations are being sponsored to train community volunteers in peer counselling and home-based care". The request for the "debriefing sessions" and offers of payment thereof also indicated their serious attending to the care worker�s personal and community development challenges. The training organisation (whom I will refer to as the Training Network, T-Net) served 18 CBOs in and around Thswane in Gauteng (including Hammanskraal and Cullinan). (T-Net is a pseudonym. I have used pseudonyms whenever the identities of individuals or organisations are at stake). The care workers and their organisations were based in poor and low to middle class communities in the townships and informal settlements around Pretoria. As these organisations were mostly small and developing and no fees were charged by T-Net for its services. Instead, the Gauteng HIV/AIDS Directorate provided T-Net funding to sponsor a manager�s salary, and the training sessions on home-based care, peer counselling and mentoring. The organisation impressed me with their networking approach to achieving their objectives. It had one manager (and a committee) who contracted independent professionals to carry out their training tasks. I understood that debriefing in the context of home based care and HIV/AIDS counselling entailed the aim to provide counsellors and care workers an opportunity to talk about their frustrations and traumatic experiences, ventilate emotions, and to consolidate these into an appreciative understanding. I also wanted to introduce a further aim, which was to prepare each care worker to reflect on his or her helping practices, to share their reflections with others and through collaborative reflection to generate some ideas on how to deal creatively with their problems and resources. I was hoping to engage my participants in a process of self-reflection and experiential learning, assuming a developmental orientation. The manager of T-Net and I started off with a meeting which all the care workers from the different client organisations attended, to discuss the need that was expressed for debriefing as well as the practicalities thereof. During this meeting, the care workers impressed me with their noble intentions and enthusiasm about home-based care work. I was impressed with their dedication to serve patients at home in return for nothing at all. Many of them expressed how their voluntary community work had given them a sense of meaning and purpose, because they were unemployed and feeling useless. Some of them just recently learned that they are HIV-positive. On exploring the need for debriefing, I found only a few care workers who felt traumatised by the way someone died. Most of the care workers� need for debriefing, centred on feelings of powerlessness and a lack of care worker support. "The policy of Department of Health is that we care and support the people at home as hospitals are full with few available beds. Many home care workers were mobilised by nurses and work hand-in-hand with them to help take care of patients at home and distribute their tablets. Hospitals are full and we have to care and support people at home. We are committed to do our work in the community voluntarily and the people we serve have no food. However, when we visit the homes of our patients, we are faced with no travelling allowance and no material support to assist our duties or the needs of our patients, such as dealing with the lack of ambulance services. Further, clinics and hospitals have become short staffed and many nurses have left the country. Care givers are thus expected to do more - filling in for the nurse." We all agreed that there was an urgent need for the debriefing sessions. I introduced them to action learning and collaborative action research. I requested them to each keep a personal diary in which they would describe problematic events and reflect on how they managed them. They were to share their notes in small group context and talk about their problem solving ideas. Where possible, each group would comprise of members from different organisations. The idea was that care workers would have the opportunity to exchange ideas with care workers elsewhere. Hopefully, from such a broader sharing of ideas new insights would also be generated. Subsequent to the first meeting, four groups of approximately 8 care workers per group engaged bi-monthly in debriefing sessions. The idea was that another round of four groups would follow thereafter, and so on for others. Participants were encouraged to keep personal diaries in their vernacular and translations were done during group sessions. During group discussions I aimed at attending to their personal style and organisational resources that related to their problem solving. The care workers were also encouraged to identify common themes and share creative ideas on ways to manage problems. The care workers� responses to my requests were surprisingly positive. Most of them impressed me with how dedicated they were at keeping their diaries and case notes. Keeping a diary made sense to them. As one care worker had put it: "Keeping a diary works well for problems solving, because you have to pause a bit and reflect on what you do from a distance. This gives you a chance to think critically about what you are going to do next, and not just going ahead and becoming overwhelmed by what happens". The care workers also seemed to enjoy opening up and comparing their experiences with care workers from other communities. The manager of T-Net had planned four sessions for the first four groups over a period of two months. However, the sessions were stopped halfway through, after they had engaged in two or three sessions, because T-Net�s governmental funding was stopped. The T-Net manager informed me: "government decided to stop funding small organisations". The funding policy of government had apparently shifted to the channelling of grants to organisations that have the capacity to manage large amounts of funds. This raised concern for the livelihood of small and developing organisations and the effectiveness of channelling their funding under the auspices of bigger organisations and consortia. Another concern was that a once-off seed fund for small, and developing Non-Profit Organisations (NPOs) were problematic for their survival. Social policymaking that showed concern for HIV/AIDS community workers and their developing organisations seemed critical. I responded by calling all participants together in a final session. Through group work, we identified common themes and stories from their diaries, my notes from sessions and our group discussion. Hence, participants and I pulled together their common themes and frustrations into a collective feedback report to the Gauteng AIDS Directorate of the Department of Health. The specific aims of this report were to: "(a) give voice to the problems that HIV/AIDS community workers and their organisations experience in the course of their community services; (b) promote an appreciation of the valuable social capital that South Africa enjoys in the field of HIV/AIDS community-based health and welfare services, by community workers in co-operation with government; and (c) give information that was pertinent to policy making and funding arrangements of government". We also requested a response from the HIV/AIDS Directorate on our report, and about policy and funding plans concerning HIV/AIDS workers and their organisations. What follows are extracts from our report, including my notes and diary inputs from the care workers. The report dealt with the home-based care workers� resources, motivation, experiences and problems, and common themes pertinent to voluntary care worker policy and funding. The care workers and their managing committees gave their permission that their inputs are included in reports to government, professionals and the public. *Organisational Resources and Social Capital* "EACH in Eersterust was started 10 years ago by clinic sisters and community members. We did a research and identified cancer and psychiatric patients as in need. We started support groups with the clients and families. Spare rooms at the clinic were given to the organisation cost free. Our activities were done with the assistance of the sister in charge at the clinic, nurses and the occupational therapist from the University of Pretoria. We have twelve volunteers. We have different support groups from Monday to Thursday for patients with stroke, disabilities, arthritis, cancer, HIV/AIDS and psychiatry. In the afternoon after each group, the sister goes out with the volunteers to visit the sick. We started home-based care funded by the Department of Health in 2000. We have five home caregivers who were trained. They serve patients with stroke, TB, cancer, diabetes, mental health and AIDS. When their patients die, they prepare the family and assist them through the process. We are in the process of erecting a Hospice Respite Centre, co-funded by the Japanese Embassy. We do fund rising three times a year for different projects". "Kopano ke Maatla (Atteridgeville) was started in 1999. We are 35 caregivers. We do home based care for patients with stroke HIV/AIDS and are Dots supporters for TB patients. We see 3 to 5 patients each per week, and do visits three to four times per week. We support 6-10 TB patients per day. We do it because we have something to do, can share with them and care for them". "The Institute for Primary Health (Soshanguve) was established in 1994. The organisation is registered under section 21 and the NPO Welfare act. They have four full time staff, 10 full time volunteers who receive R 500 per month incentive from the Department of Health. There is a further 20 volunteer support group. The organisation also has a management committee and a board of directors. Activities include home based care, school talks, counselling, radio talk shows, church outreach and a youth programme". "Thembelisha (Mamelodi) has 20 caregivers. Church members of the Apostic Faith Mission started this project in February 2000. Their aim is to help people who are terminally ill and who are living alone and dying with no one to look after. As a church organisation a lot of people bring problems at church and we realised that there is a need to help the community, which is suffering from HIV/AIDS and related diseases. Initially, we did not have anything, e.g. medicine, gloves and money for transport to go door-to-door visiting our patients. The church now gives us Sunday offerings to help for transport. We are operating in Stanza Bopape and around Nellmapius. We are being helped by our local clinics in Stanza I and II. It is our spirituality that makes us keep on going - we do it for the love and moral support we can give others". Volunteer workers do not have full time employment and are often not employed at all. Some of them sell fat cakes, do food gardens, work at cash loans, make beads, depend on their husbands or parents, do piece jobs or knit jerseys. Many volunteers were recruited by retired sisters or sisters at clinics from the Department of Health. Some initiated their organisations from their churches, and belong to burial societies or church groups. "Thusong Health Project in Pretoria offers services to sex workers. Some sex workers want to change their job. We are now working on establishing a job creation project for them, starting with dressmaking". *Having to cater for all needs of the patient and family* �The problem is that your patients become fully dependent on you. On your visit you find that they do not have food, and they can�t take the medication you bring them without food. Even when their condition is such that they need to see a doctor, their family has no money for transport. They live in conditions where there is no piped water, and you have to carry many buckets of water into their room so that you can wash them. You also leave sufficient buckets of water in their room so that a family member can wash them for the two days that you will not be visiting. On the third day you however find that no-one washed the patient." "Although you have explained to your patient and the family about how home based care work, they are waiting for you as their saviour. You wonder now, how should you influence the family?" "Most of us have five patients whom we visit three times during the week. The family however calls us over weekends to attend to a crisis and to do the patients� dressing". "One of my patients once asked me for money to buy some fruit on his way to the hospital but I refused. Thereafter I felt so guilty that I bought a bag of oranges and sent it after him to hospital". "It is difficult to decide when to give and when not and dealing with your guilt. There is this bible story about the women who refused to help this stranger who asked for help, because she was waiting for Jesus to come to her door. But thereafter she found that the stranger whom she rejected was Jesus". "There was this one patient of ours who lay dead in her bed for three days, her baby still sucking and the husband was just sitting there drinking. This made me feel disturbed". "Another patient�s bedsores were that septic that the room had a smell. When I went to see my doctor, I cried and wanted him to wash the smell from my face". "The husband says �you stole my wife� when you refer her to a hospice. The husband is not dealing with the illness." "Our patients are the poorest of the poor, they give use many complaints and always wants something to eat. With no support from elsewhere, it now looks like it is your burden. The Health Department should support home caregivers and not leave them empty-handed. They should give us food parcels to hand out". "Hospitals dump dying patients on you and the care giver is being accused when the patient is worse. Caregivers get burnout and frustrations because families are not helpful and start to blame care givers if something happen to their sick person. They load all their problems on the caregiver especially after the death of the patient". "At times when I find my patient being angry and the family is also angry with him, I feel trapped between them not knowing what to do - how do I create a peaceful environment, how do I deal with powerlessness and anger?" "The patients that are referred to us are critical. Often their families abandon them and the hospital does not treat them - they are now dependant on the home care giver." "We have problems that we don�t know how to solve, like transport for patients and money for it. We go from pillar to post to get someone to offer a car, an ambulance and a donation to pay for the petrol. We are too few - we cannot reach everyone. If policy makers could see how organisations are struggling, do a research of organisations. People down here, their organisations have nothing. People up there should see and touch links down here. We should get a push, moral support. It is dark down here - someone should give light. We need support, even our youth". *The disabled* "Many of the families that we care for have problems with disabled members at home. For example, this one granny is taking care of her daughter�s child who is mentally disabled. She cannot send him to special school because she says she has no money for school fees. She says the Social welfare cannot help her, and she cannot remember with whom she talked. When I asked her out about her problem to get the child�s disability fund, it came out that the child does not have a birth certificate, and the mother in Johannesburg does not cooperate, and the social worker here does not do home visits." "There are no wheel chairs for people with stroke". *Dealing with denial* "People move around, especially after they had tested HIV positive. They cannot face their families and their friends reject them". "There is this one youth that just sits with his head in his hands. When I try and talk to him he chases me away". "My one client is HIV positive, but she does not tell her husband". "This year I buried four girls from one boyfriend. It is difficult to deal with denial, one way that works is to just keep on giving information and to make sure that people know where to get help and support". *Recognition and support from nurses, doctors and social workers - some successes and some let downs* "We as care givers, are committed to do our work in the community voluntarily and the people we serve have no food. The policy of DOH is that we care and support the people at home as hospitals are full with few available beds. However, when we visit the homes of our patients, we are faced with no travelling allowance and no material support to assist our duties or the needs of our patients". "Nurses ignore us when we want to assist them. Some even use abusive language that makes us angry. We even feel like giving up because we are not getting any incentives for doing the work we are doing voluntarily". "Some doctors are supportive and even treat our patients for free as long as the caregiver is present". "Social workers are problematic - they always have an excuse that they have no transport to visit patients. So the caregivers are pressurised to do something for the patients and have to pressurise social workers to do something". "Our caregivers always ask about vacant houses that could be used for home care or hospice. With their efforts we will in future run our own hospice in Soshanguve. Already, Legae Clinic donated 20 beds and a 13-roomed house has been given to us. We are just waiting for the finalisation of papers". "Our caregivers care for all patients with all their sicknesses at home. They thus underwent a three-day DOTS workshop at Tlamelong Clinic. 20 caregivers in 2 groups attended the workshop. No transport funds were provided. They were however grateful of the training opportunity provided to them". "We believe that networking and partnership with all stakeholders are important. So caregivers are taking initiative to introduce themselves so as to get moral support and donations, to be able to help those in need." "Another problem with social workers is that they are absent in new settlement areas - they quit to work in the city". "A big problem is that in some of our areas the social workers and clinic sisters do not recognise our counsellors, even though they received training through T-Net. The Department of Health should introduce them to the clinics". *Hospices, orphanages and child headed families* "There are few hospices and many orphans are left to fend for themselves and turn to the street". "One AIDS patient died and lefts four kids, who were taken to their uncle. The second-born did not get along with him and stayed at the shack. She got raped, but runs away when I approach her". "Some children are left alone, no one to support them with food and everything they want. Children no longer go to school. Some orphans do not have birth certificates and if we want to help them to get some grants this becomes a problem. There is also a problem for those who are from 7 years and up - they are not allowed to get any grant". *Voluntarism and incentives* "Some of us get incentives such as a transport allowance, R 500 for voluntary work and a diploma in Home Based Care and peer counselling." *Co-optation of People Living With AIDS who serve as care givers and HIV/AIDS counsellors* "We, as the Success Support Group don�t have the resources to take care of our family and taking care of our People With AIDS (PWAs). Our group does counselling and awareness raising, home and hospital visits and exhibitions. And the most important thing is SUPPORT - PWAs need moral support. As the Success Support Group, we have a big big problem about people wanting to make money through us PWAs. For instance, an individual started a project for PWAs through F-Company, S and Child Welfare. While he was looking forward to satisfy his needs and to use PWAs, we gained nothing even though we were bribed by his offer to give our children money for school and pre-school. Many people advised us that we must be careful of him and that he was no longer working at S but still used the name of F-Company. Another example is M-Hospice who gets food donations from W for PWAs while PWAs get nothing. The Success Group is trained to do counselling but while M-Training do accommodate us with office space, they do not provide for the use of other facilities such as telephone and fax. Worst of all, they ignore us and invite people from outside to do counselling. The other problem is when there is an AIDS awareness event, we volunteer to help them but at the end of the day we are nothing because they don�t even give mention of our names or recognise our group. M-H gain funding from our AIDS status - this, they do by expecting us to disclose our status at short notice to visitors for R 50, we however feel depressed and used thereafter." *Common themes pertinent to voluntary care work policy and funding* The care workers and I highlighted the following themes from their diaries and our collective discussion: Caregivers cater for all needs of the patient and family - social welfare, economic, physical and psychological health Their services are dependent on good linking and co-operation with doctors, sisters, nurses, social workers, psychologists and their organisations Voluntarism requires incentives and material support Care givers do an excellent job in taking care of their patients and providing information to family members to assist them to deal with diseases Hospices and orphanages are lacking and are being developed through government-community organisation The disabled and resources for them require urgent attention Care givers, the role of the community and their organisational structures (eg church groups), are not always given the recognition they deserve, and are often abused and co-opted for the selfish needs of the health professional and the NGO sector Developing organisations, often lacking in resources and ability to secure funding, are not necessarily unskilled or ineffective in the services that they offer to the public. My subsequent progress I thought that an approach of information exchange would facilitate a response from government, only to find that our government contact persons claimed that they had not received our report. Subsequently, the manager of T-Net arranged a meeting with a managing departmental official, and invited some care workers and me to attend. At this meeting I was surprised to learn that it was T-Net�s sponsorship that was stopped, and not all small organisations as I were made to (or had chosen) to believe. The government official, with whom we had a meeting, also informed us that the department never requested "debriefing sessions" for care workers. She however thought that government workers should first be engaged in action learning. She also warned that we were consulting "the wrong officials", and that T-Net should never have received funding because their proposal was weak. I could not help feeling somewhat mislead and paranoid about the situation. What happened seemed to me a repetition of my own story that I tended to be eager to help others, only to let myself to be abused by individuals or the system. Did I get the story wrong from the manager of T-Net? Was the department "full of politics"? I subsequently consoled myself by letting go of worrying about the whole incident - not to become trapped in a power play with others. No one in a development context wants to be told what to do and how to behave. Perhaps, it would help others and myself if I would stay focused on free information exchange. Subsequently, from a meeting with health professions by the AIDS directorate about their HIV/AIDS care programme, it did appear that some of the issues that were raised by our report were receiving attention. My participants and I had voiced our concerns about home-based care and perhaps we were being heard. On a follow-up, some of the home-based care NPOs also informed me that they had started regular meetings where their care workers share and reflect on their work experiences. However, others maintained that they missed that networking they had with care workers from other organisations and wished for a more collaborative form of debriefing. What does my results mean in theory? The virtual conference page on "Something for Nothing" encouraged me to wonder about the costs and gains of voluntary work for each participant involved - the client of the home-based care worker, the volunteer, the NGO management, government, professionals � Are we building a "predatory [health care] culture" of "stalkers and victims"? (McLaren, 1995, as cited in Critical Methods Webpage). (I have placed my additions to quoted texts in brackets). What kind of traps do we set? I agree with Kevin William, who had posted a comment on my abstract, that one should be wary of just blaming "the government". None of us really want to be obstructionist. A blaming approach would also further a power struggle, holding in place behaviours and relationships that were problematic in the first place. We would thus maintain "human development [as] � a unique set of tactics through which power proliferates and extends itself beyond the range of other development strategies" (Vaughan M Dutton, Subjects of Development, virtual Critical Methods Conference). As DJ had highlighted: "Perhaps we are all predators [and victims] - academics, home workers, nurses, dr's, politicians?". The problem of power, voice and the co-option of community members by those dominant for their egotistic needs have been major concerns for participatory researchers in the development context (Hall, 1992). Many discussions on civil society focus on different kind of institutions or associations, their behaviour and the relations between them. Questions have been raised about how the policies of government and international aid policies affect the health care system and the work done by volunteers and community health activists in developing countries. Relatively little attention is however given to the question what actually motivates people to found certain institutions or to get involved in them, e.g. to become an �activist� (Buijs, 2002) or a voluntary care worker. From a constructivist perspective, each community care practitioner has a unique tendency to act (and be trapped) in a certain way. Our tendencies are closely related to the assumptions and myths that we hold about the world and how we should operate upon it. Analysing the care workers� frustration and their diary entries, they appeared to gravitate toward the following tendencies and virtues: Filling in for � Catering for all needs Sympathy Guilt Powerlessness and anger In need of moral support Morality Perseverance Being abused Loving kindness I gather that many of the care workers, like me, tend to get trapped in the moral domain. Perhaps, in our eagerness to help others we compromise ourselves. Our uncritical support of the government�s new home-based care approach (an ideology) puts us at risk of becoming victims of the (our) approach. Thus, each participant, including governmental official, NPO manager, professional and volunteer care worker could find it useful to start with self (Pistorius, 2000) and to engage in critical reflection about his or her approach to home-based care work. Perhaps care workers (like me) should not be so eager to help others and health organisations and look critically at the approach they are supporting. To my understanding, health care professionals, together with the Department of Health, non-governmental organisations and churches in poor communities in South Africa had recently taken a community-based approach to HIV/AIDS care and prevention. This approach rests on the assumptions that: Terminally ill people can be treated in the community - at home or in a hospice - and by volunteer workers who are community members Ideally, people prefer to die at home or in their community, maintaining personal dignity and contact with loved ones Community members can be trained to deliver community education, peer counselling and home-based care The HIV/AIDS epidemic will be curbed through community members� active involvement in treatment and prevention efforts Community-base care, primary health care and prevention are programmes that many of us fought for as part of our struggle for an equitable and community participatory health care system during the 1980s. Hence, it is understandable that we should rejoice that government together with community and professional players would embrace this approach. However, from my debriefing experience it is clear that home-base care not only poses gains, but also some serious emotional and financial costs. One would suppose that these costs were unexpected and that voluntary care workers engage and persevere in their work because they believe that home-based care could help them achieve the democratic health care system we all had in mind? What are the dynamics around voluntarism and home-based care in poor and developing communities? I found a fair amount of literature on voluntarism as a positive institution in society and how to be a good leader of voluntary workers (Cf. Voluntas. International Journal of Voluntary and Nonprofit Organizations; Nonprofit and Voluntary Sector Quarterly; and, Internet Nonprofit Center). There is a growing recognition of the importance of social capital in maintaining a healthy and vibrant civil society. Volunteering is viewed as a core component of social capital (Onyx & Leonard, 2002). In terms of my search, volunteer workers should benefit from an appreciative inquiry and the building of organisational skills. Perhaps my home-based care worker organisations and government are disorganised. I could however not find any reports on home-based care for the terminally ill that shows that the writer attempted to: (a) reflect in public on the difficulties that voluntary AIDS care workers experience, and (b) search for ways to deal with the challenges that care workers are faced with, e.g. care and support of the care worker. The few project reports that I had come across about this approach, were mostly presented in newspapers and newsletters. Some examples include: A report in the Sunday Times, August 25 2002, "They brought me back from death. Programme involved in row over UN funding takes the load off hospitals by treating HIV-positive people as outpatients" by Mawande Jubasi. During May 2002, Hospice Care Plus, Kentucky, received the innovation of the week, from The Peter F. Drucker Foundation for Nonprofit Management, for expanding hospice care to terminally ill patients who wish to remain at home while also offering individuals the opportunity to develop marketable skills (<http://drucker.org/innovation/innov-of-week/>). These care workers were paid by the family for their home care work, which included cleaning the patient�s room and doing house sitting. I also attended the African Conference on the Social Aspects of HIV/AIDS Research (SAHARA), organised by the Human Science Research Council, 1-4 September 2002 and was impressed that there were various presentations about home-based care projects (Cf. Modiba, 2002; Williams, 2002; Mundeta & Gomo, 2002;). These presentations however confirmed my concern that presenters mainly talked about their positive achievements. Only one presenter (Williams, 2002) highlighted that they were planning to study the impact that home-based care work has on youth care workers and that for their support they had tried to link youth care workers up with older care groups. The above-mentioned reports offered the following perceptions about the gains for different players from community and home-based care: Governmental clinics and hospitals can keep patient admissions down. The costs of health services and hospitalisations will be lowered. Community members who become volunteer workers gain skills and contacts that will make them employable. Volunteer workers are trained and recognised by reputable community and government organisations. Volunteer workers gain a sense of meaning and respect through their altruistic offering of community services. The terminally ill and their families can gain support for themselves and their family from volunteers whom they can respect and trust as of good reputation. HIV-positive people can secure support, for themselves and their family members, by offering their voluntary services to AIDS service organizations. Some of the SAHARA presentations had shed some light on my "debriefing experience". A presentation by Swartz (2002), on "The impact of local government HIV/AIDS programmes in South Africa", showed that home-based care projects are from amongst the most popular HIV/AIDS projects that community members embark on nowadays. Another enlightening presentation was by Mabetoa (2002), the HIV/AIDS director of the Department of Social Development, who gave a critical analysis on "The social impact of HIV/AIDS and the growing demand for social development services". She highlighted that although there was a growing demand for social development services at local community level, this were yet to be incorporated into HIV/AIDS programmes. HIV/AIDS programmes often focus on physical aspects, she said. The "Integrated Community Based Care and Support Model" is "an ideal situation and making it work has many challenges". Perhaps then, because it is a new approach, participants tend to emphasise positive gains, letting "negativities" remain in the background. What I had found helpful though, was to contrast how stories of home-based care work differed to my "debriefing experience". For example, the Red Cross in Southern Africa (Mundeta, 2002) had strong organisational resources - such as being international and successful in terms of funding - and had provided incentives and recognition for volunteers. These incentives include, an allowance, a bicycle, a uniform, food parcels for the volunteer as well as for patients, support groups, and networking conferences for volunteers. Furthermore, Vicky Timm, who made a presentation on "Being a hospice worker: Jay�s story", at the Critical Methods Conference, showed that her hospice worker was basically happy. His story contrasted with my care worker experiences - Jay�s hospice organisation had provided him an allowance, had support groups for care workers, and Jay did not have to grapple with challenges such as not having access to piped water, electricity, ambulances, social workers, medical services, being unemployed, etc. It is tough to work in a poor community. I urge anyone to try to do in a poor community what they are doing successfully in an affluent community. Health care is more expensive in poor communities; it is more expensive to maintain your health when you have no access to water and electricity. From my "debriefing experience, it seems that government and NGO health care organisations tighten their belts, and the volunteer workers pay the costs. Is that fair? Is that sustainable? As one Critical Methods Conference participant pointed out, their volunteer organisation collapsed because members were expected to use and offer their own resources to carry organisational activities. This confirm my suspicion that volunteers tend to be eager to help others, and support popular ideas, only to be abused by dominant individuals or the system. Unemployed voluntary care workers seem particularly at risk of being subjugated to the dominant ideas and perceptions that their programme planners hold. Thus, structural inequalities in their community and workplace are being maintained under the ideological banner of "community-based health care" and "democracy". Care workers may thus (tend to) become the victims of, and fall prey to, the community-based care programmes that are instituted by those in power. To turn an oppressive system around, care workers should be assisted to have "the knowledge, skills, values and attitudes to question, understand, interrogate and eventually act as change agents of structural inequalities in their place of employment" (Giroux, 1988, as cited on Critical Methods web page). Government officials, professionals and NGO managers should question whether their application of a new approach to things do not maintain the status quo (i.e. inequality), and do not make matters worse for others. It could also be helpful to reflect critically: Why do we expect home-based care work to be voluntary? Does voluntary work mean "no pay", or, a "not-for-profit" payment? Why is it that most home-based care workers are female? Do we expect from them to clean people�s rooms and to clean their wounds for free, because they are women? HIV/AIDS programme planners should thus take care of the values and psychosocial aspects underlying their approach and include care of the care worker into their budgets. What should be done? How should participants of home-base care take care of their approach and care of care workers? It could be helpful if all of role players engage in a process of critical self-reflection and share their reflections collectively. By starting with self, participants take cognisance of their personal tendencies and how this may interfere with their progress. Such a process may make it less likely that participants engage in blaming or defensive interaction, perpetuating a struggle approach to life. A sharing of reflections, including our stories of experiential learning and trial and error, are bound to lead to positive responses from others. Take for example the food parcels that home-based care workers can get for their clients from the Department of Welfare nowadays. One of the aspects of the debriefing sessions that the care workers valued most was that they could share their experiences and self-reflections with people outside their usual circle of contacts. My reflections were furthermore aided when I could share, and contrast, my experience with others elsewhere and during the Critical Methods Conference. It is through noticing how our experiences and contexts differ, that I can see a bigger picture. For now, I believe that we can create knowledge both individually and collectively through an appreciation of difference in Bateson�s sense - knowledge is information that makes a difference (Cf. Bateson, 1972, 1979). Cherishing one�s own and other people�s information (their difference and creativity), may offer an alternative and also more resourceful and socially responsible way of dealing with home-based care. References Bateson, G. (1972). Steps to an ecology of mind. New York: Jason Aronson. Bateson, G. (1979). Mind and nature. New York: Dutton. Buijs, G.J. (2002, July). Sources of Inspiration: Toward a Comparative Perspective on Why People Get Involved in the Third Sector. Paper presented at the International Society for Third-sector Research Fifth International Conference, Transforming Civil Society, Citizenship and Governance: The Third Sector in an Era of Global (Dis)order, Cape Town, South Africa. DJ, (2002, September). Comments on abstract. Voluntary HIV/AIDS home-based care work traps = a predatory health care system? Presented on 8th^{Qualitative virtual Critical Methods Conference, Something for Nothing: Subjectivity and society in the New Economy, Centre for Applied Psychology, University of South Africa, Pretoria.} Dutton, V. M. (2002, September). Subjects of Development. Abstract presented on 8th Qualitative virtual Critical Methods Conference, Something for Nothing: Subjectivity and society in the New Economy, Centre for Applied Psychology, University of South Africa, Pretoria. Giroux, H. (1988). The transformative intellectual. Cited on the 8th Qualitative virtual Critical Methods Conference, Something for Nothing: Subjectivity and society in the New Economy, Centre for Applied Psychology, University of South Africa, Pretoria. Hall, B.L. (1992). From margins to center? The development and purpose of participatory research. American Sociologist, 23(4), 15-28. Hospice Care Plus (2002, May). The Companion Program. Cited on The Peter F. Drucker Foundation for Nonprofit Management, Drucker Nonprofit Innovation Discovery Site, <http://drucker.org/innovation/innov-of-week/> and http://pfdf.org/innovation/innovation/innovation.asp?innov-id=159. Internet Nonprofit Center, Infromation for and about nonprofits, http://www.nonprofits.org/ William, K. (2002, September). Comments on abstract. Voluntary HIV/AIDS home-based care work traps = a predatory health care system? Presented on 8th Qualitative virtual Critical Methods Conference, Something for Nothing: Subjectivity and society in the New Economy, Centre for Applied Psychology, University of South Africa, Pretoria. Mabetoa, M. (2002, September). The social impact of HIV/AIDS and the growing demand for social development services. Paper presented at the African Conference on the Social Aspects of HIV/AIDS Research (SAHARA), Human Science Research Council, Pretoria. Jubasi, M. (2002, August 25) They brought me back from death. Programme involved in row over UN funding takes the load off hospitals by treating HIV-positive people as outpatients. Report in Sunday Times, p.13, South Africa. McLaren, P. (1995). Cultural Pedagogy and Predatory Culture. Book cited on the 8th Qualitative virtual Critical Methods Conference, Something for Nothing: Subjectivity and society in the New Economy, Centre for Applied Psychology, University of South Africa, Pretoria. Modiba, P. (2002, September). The integration of HIV/AIDS Care and Support into primary health care in Gauteng Province (South Africa). Paper presented at the African Conference on the Social Aspects of HIV/AIDS Research (SAHARA), Human Science Research Council, Pretoria. Mundeta, B. & Gomo, E. (2002, September). Red Cross Societies and HIV/AIDS: Southern African experiences and plans in prevention and care. Paper presented at the African Conference on the Social Aspects of HIV/AIDS Research (SAHARA), Human Science Research Council, Pretoria. Nonprofit and Voluntary Sector Quarterly, Sage Publications, Inc. Onyx, J. & Leonard, R. (2002, July). The relationship between formal and informal volunteering: A social capital framework. Paper presented at the International Society for Third-sector Research Fifth International Conference, Transforming Civil Society, Citizenship and Governance: The Third Sector in an Era of Global (Dis)order, Cape Town, South Africa. Pistorius, A.G. (2000). Participatory community development - a networking approach. Unpublished doctoral thesis, University of South Africa, Pretoria Swartz, L. (2002, September). The impact of local government HIV/AIDS programmes in South Africa. Paper presented at the African Conference on the Social Aspects of HIV/AIDS Research (SAHARA), Human Science Research Council, Pretoria. Timm, V. (2002, September). Being a hospice worker: Jay�s story. Paper presented on 8th Qualitative virtual Critical Methods Conference, Something for Nothing: Subjectivity and society in the New Economy, Centre for Applied Psychology, University of South Africa, Pretoria. Voluntas, International Journal of Voluntary and Nonprofit Organizations, http:// www. Istr.org/pubs/voluntas/ Williams, E. (2002, September). Increasing access to care and support for PLHA: Building the capacity of youth caregivers in rural Zambia. Paper presented at the African Conference on the Social Aspects of HIV/AIDS Research (SAHARA), Human Science Research Council, Pretoria.
	Peer reviews of this paper appear below.
	Review 1 Dear Annalie This is the first time that I engaged in a virutal review environment. Maybe my comments and suggestions are not applicable, but I would like to learn from you and the process. I read about three stories in your article. The first story is about the volunteers, the second about the process of involvement and the third story is your voice about your experiences as well as a reflection on the process. These three story lines are sometimes more visible than others. I would have appreciated a clearer description of your own story. In your abstract I wondered by whom the debriefing sessions were requested? What is the meaning of "a developmental orientation"? What was the "model for care worker self-development"? A richer dscirption of the contexts in which the care workers worked would have been helpful to understand the issues that they deal with. And I assume they were all women? Where they? Can I read "action learning" and "experiential learning" as describing the same concept? How did the group decide what topics to discuss? You said that the aim according to you was that they hand an opportunity to talk about their frustrations and traumatic experiences. I also saw something of a commitment and perseverance in the whole process. One of the issues that I also noted in the care workers verbal transcripts was guilt feelings. I wondered how that contributed to their involvement in the caring for others and how it played into the dynamics of exploitation. How were the themes determined that you discussed as commen themes pertinent to voluntary care work police and funding? And I was wondering about the emotional "cost" involved? Kind regards Vera Roos
	Review 2
	Author reply Dear Vera, Thank you for your helpful comments. I made some clarifying changes in the text. Kind regards Annalie

1 Dec 2004 - -h1-Please check the sites about- Tons of interesdting stuff!!! -/h1-

10 Sep 2002 - would like to know more about care for care givers. Otherwise great ork done - uhiriwe mary

Action learning and reflection with HIV/AIDS home-based care workers in Gauteng
8th Annual Qualitative/Critical Methods Conference - Critical Methods Society

Something for nothing

	Paper presented at the 8th Annual Qualitative Methods Conference: "Something for nothing" 1 May to 30 September 2002 (http://criticalmethods.org/p105.mv)
	Voluntary HIV/AIDS home-based care work traps = A predatory health care system? Annalie G. Pistorius Contact e-mail: [email protected] Affiliation: Department of Psychology, Medical University of Southern Africa
	Last year, I had engaged voluntary home-based care workers and HIV/AIDS peer counsellors in small group discussions, using action learning and encouraging each to keep a personal journal on their care work experiences. The need for the "debriefing of traumatised" home-based care workers was identified by a peer support training organisation together with a managing governmental official, HIV/AIDS counsellors, home-based care workers and their community organisations in Tshwane, South Africa. When the government official requested me to do "debriefing sessions" with the home-based care workers, and offered payment thereof, I was impressed about their serious attending to the care worker�s personal and community development challenges. At commencement of the sessions, I was also moved with the great number of volunteers, many but not all of them HIV-positive, mostly women, many mobilised by members of the health department and community groups in support of people living with HIV/AIDS and dying at home. I thought: "something positive is happening - community organisations are being sponsored to train community volunteers in peer counselling and home-based care". The voluntary workers opened up very easily and offered many personal stories about their home-based care experiences that made them feel traumatised and powerless. I was hoping to assume a developmental orientation, promoting more than mere crisis intervention. I managed to give the counsellors and care workers an opportunity to reflect on and share experiences related to an appreciation of their services, eg what motivated them to do this kind of work, their personal tendencies and how they dealt creatively with problems. They also voiced common dilemmas pertinent to policy-making and funding. Common themes included: being in the front line and having to deal with all the needs of the patient/client; the lack of multi-sectoral and inter-departmental co-operation; voluntarism requires incentives and material support; and, care givers are not always given the recognition they deserve, yet they are being co-opted for the selfish needs of the health sector. We also explored a model for care worker self-development, which entailed balancing power and control issues with facilitating information flow and creativity. My sessions were however stopped halfway through by the manager of the organisation that had arranged them. He informed me: "government decided to stop funding of small organisations". I responded by calling all participants together into a final session, pulling together their common themes and frustrations into a collective feedback report to the AIDS directorate of government. I thought that a shift to facilitating information flow would render a response, only to find that our government contact persons claimed that they had not received our report. Moreover, I was informed that it was the said organising NGO who's sponsorship was stopped, that government never requested "debriefing sessions", that we should not consult "the wrong officials", etc. I could not help feeling somewhat mislead and paranoid. What happened seemed to me a repetition of my story that I tended to be eager to help others, only to be abused by individuals or the system. The virtual conference page on "Something for Nothing" also encourage me now to wonder about the costs and gains of voluntary work for each participant involved - the client of the home-based care worker, the volunteer, the NGO management, government, professionals � Are we building a "predatory (health care) culture" of "stalkers and victims"? (McLaren, 1995). What kind of traps do we set?
	Introduction In this paper I present the experience I had with the debriefing of voluntary home-based care workers and HIV/AIDS peer counsellors in and around Tshwane (Pretoria) during 2001. I reflect on what proceeded when the sessions were stopped by the managing organisation when their governmental funding ended. I include extracts from the diary entries and inputs that the care workers had offered me concerning their experiences of home-based care, which we provided in a feedback report to the Gauteng HIV/AIDS Directorate of the Department of Health. I theorise on how different players (like me) might tend to be eager to help others while being uncritical of how our support of a new approach may make matters worse. I also include the responses I gained from others and during the Critical Methods Conference, searching for ways on how to turn the problem around. I finally offer some ideas on how participants of the home-based care approach could take care of themselves and care workers. Debriefing voluntary home-based care workers Last year, I had engaged voluntary home-based care workers and HIV/AIDS peer counsellors in small group discussions, using action learning and encouraging each to keep a personal journal on their care work experiences. The need for the "debriefing of traumatised" home-based care workers was identified by a peer support training organisation together with a managing governmental official, HIV/AIDS counsellors, home-based care workers and their community organisations in Tshwane, South Africa. When the government official requested me to do "debriefing sessions" with the home-based care workers, and offered payment thereof, I was impressed about their serious attending to the care worker�s personal and community development challenges. At commencement of the sessions, I was also moved with the great number of volunteers, many but not all of them HIV-positive, mostly women, many mobilised by members of the health department and community groups in support of people living with HIV/AIDS and dying at home. I thought: "something positive is happening - community organisations are being sponsored to train community volunteers in peer counselling and home-based care". The request for the "debriefing sessions" and offers of payment thereof also indicated their serious attending to the care worker�s personal and community development challenges. The training organisation (whom I will refer to as the Training Network, T-Net) served 18 CBOs in and around Thswane in Gauteng (including Hammanskraal and Cullinan). (T-Net is a pseudonym. I have used pseudonyms whenever the identities of individuals or organisations are at stake). The care workers and their organisations were based in poor and low to middle class communities in the townships and informal settlements around Pretoria. As these organisations were mostly small and developing and no fees were charged by T-Net for its services. Instead, the Gauteng HIV/AIDS Directorate provided T-Net funding to sponsor a manager�s salary, and the training sessions on home-based care, peer counselling and mentoring. The organisation impressed me with their networking approach to achieving their objectives. It had one manager (and a committee) who contracted independent professionals to carry out their training tasks. I understood that debriefing in the context of home based care and HIV/AIDS counselling entailed the aim to provide counsellors and care workers an opportunity to talk about their frustrations and traumatic experiences, ventilate emotions, and to consolidate these into an appreciative understanding. I also wanted to introduce a further aim, which was to prepare each care worker to reflect on his or her helping practices, to share their reflections with others and through collaborative reflection to generate some ideas on how to deal creatively with their problems and resources. I was hoping to engage my participants in a process of self-reflection and experiential learning, assuming a developmental orientation. The manager of T-Net and I started off with a meeting which all the care workers from the different client organisations attended, to discuss the need that was expressed for debriefing as well as the practicalities thereof. During this meeting, the care workers impressed me with their noble intentions and enthusiasm about home-based care work. I was impressed with their dedication to serve patients at home in return for nothing at all. Many of them expressed how their voluntary community work had given them a sense of meaning and purpose, because they were unemployed and feeling useless. Some of them just recently learned that they are HIV-positive. On exploring the need for debriefing, I found only a few care workers who felt traumatised by the way someone died. Most of the care workers� need for debriefing, centred on feelings of powerlessness and a lack of care worker support. "The policy of Department of Health is that we care and support the people at home as hospitals are full with few available beds. Many home care workers were mobilised by nurses and work hand-in-hand with them to help take care of patients at home and distribute their tablets. Hospitals are full and we have to care and support people at home. We are committed to do our work in the community voluntarily and the people we serve have no food. However, when we visit the homes of our patients, we are faced with no travelling allowance and no material support to assist our duties or the needs of our patients, such as dealing with the lack of ambulance services. Further, clinics and hospitals have become short staffed and many nurses have left the country. Care givers are thus expected to do more - filling in for the nurse." We all agreed that there was an urgent need for the debriefing sessions. I introduced them to action learning and collaborative action research. I requested them to each keep a personal diary in which they would describe problematic events and reflect on how they managed them. They were to share their notes in small group context and talk about their problem solving ideas. Where possible, each group would comprise of members from different organisations. The idea was that care workers would have the opportunity to exchange ideas with care workers elsewhere. Hopefully, from such a broader sharing of ideas new insights would also be generated. Subsequent to the first meeting, four groups of approximately 8 care workers per group engaged bi-monthly in debriefing sessions. The idea was that another round of four groups would follow thereafter, and so on for others. Participants were encouraged to keep personal diaries in their vernacular and translations were done during group sessions. During group discussions I aimed at attending to their personal style and organisational resources that related to their problem solving. The care workers were also encouraged to identify common themes and share creative ideas on ways to manage problems. The care workers� responses to my requests were surprisingly positive. Most of them impressed me with how dedicated they were at keeping their diaries and case notes. Keeping a diary made sense to them. As one care worker had put it: "Keeping a diary works well for problems solving, because you have to pause a bit and reflect on what you do from a distance. This gives you a chance to think critically about what you are going to do next, and not just going ahead and becoming overwhelmed by what happens". The care workers also seemed to enjoy opening up and comparing their experiences with care workers from other communities. The manager of T-Net had planned four sessions for the first four groups over a period of two months. However, the sessions were stopped halfway through, after they had engaged in two or three sessions, because T-Net�s governmental funding was stopped. The T-Net manager informed me: "government decided to stop funding small organisations". The funding policy of government had apparently shifted to the channelling of grants to organisations that have the capacity to manage large amounts of funds. This raised concern for the livelihood of small and developing organisations and the effectiveness of channelling their funding under the auspices of bigger organisations and consortia. Another concern was that a once-off seed fund for small, and developing Non-Profit Organisations (NPOs) were problematic for their survival. Social policymaking that showed concern for HIV/AIDS community workers and their developing organisations seemed critical. I responded by calling all participants together in a final session. Through group work, we identified common themes and stories from their diaries, my notes from sessions and our group discussion. Hence, participants and I pulled together their common themes and frustrations into a collective feedback report to the Gauteng AIDS Directorate of the Department of Health. The specific aims of this report were to: "(a) give voice to the problems that HIV/AIDS community workers and their organisations experience in the course of their community services; (b) promote an appreciation of the valuable social capital that South Africa enjoys in the field of HIV/AIDS community-based health and welfare services, by community workers in co-operation with government; and (c) give information that was pertinent to policy making and funding arrangements of government". We also requested a response from the HIV/AIDS Directorate on our report, and about policy and funding plans concerning HIV/AIDS workers and their organisations. What follows are extracts from our report, including my notes and diary inputs from the care workers. The report dealt with the home-based care workers� resources, motivation, experiences and problems, and common themes pertinent to voluntary care worker policy and funding. The care workers and their managing committees gave their permission that their inputs are included in reports to government, professionals and the public. *Organisational Resources and Social Capital* "EACH in Eersterust was started 10 years ago by clinic sisters and community members. We did a research and identified cancer and psychiatric patients as in need. We started support groups with the clients and families. Spare rooms at the clinic were given to the organisation cost free. Our activities were done with the assistance of the sister in charge at the clinic, nurses and the occupational therapist from the University of Pretoria. We have twelve volunteers. We have different support groups from Monday to Thursday for patients with stroke, disabilities, arthritis, cancer, HIV/AIDS and psychiatry. In the afternoon after each group, the sister goes out with the volunteers to visit the sick. We started home-based care funded by the Department of Health in 2000. We have five home caregivers who were trained. They serve patients with stroke, TB, cancer, diabetes, mental health and AIDS. When their patients die, they prepare the family and assist them through the process. We are in the process of erecting a Hospice Respite Centre, co-funded by the Japanese Embassy. We do fund rising three times a year for different projects". "Kopano ke Maatla (Atteridgeville) was started in 1999. We are 35 caregivers. We do home based care for patients with stroke HIV/AIDS and are Dots supporters for TB patients. We see 3 to 5 patients each per week, and do visits three to four times per week. We support 6-10 TB patients per day. We do it because we have something to do, can share with them and care for them". "The Institute for Primary Health (Soshanguve) was established in 1994. The organisation is registered under section 21 and the NPO Welfare act. They have four full time staff, 10 full time volunteers who receive R 500 per month incentive from the Department of Health. There is a further 20 volunteer support group. The organisation also has a management committee and a board of directors. Activities include home based care, school talks, counselling, radio talk shows, church outreach and a youth programme". "Thembelisha (Mamelodi) has 20 caregivers. Church members of the Apostic Faith Mission started this project in February 2000. Their aim is to help people who are terminally ill and who are living alone and dying with no one to look after. As a church organisation a lot of people bring problems at church and we realised that there is a need to help the community, which is suffering from HIV/AIDS and related diseases. Initially, we did not have anything, e.g. medicine, gloves and money for transport to go door-to-door visiting our patients. The church now gives us Sunday offerings to help for transport. We are operating in Stanza Bopape and around Nellmapius. We are being helped by our local clinics in Stanza I and II. It is our spirituality that makes us keep on going - we do it for the love and moral support we can give others". Volunteer workers do not have full time employment and are often not employed at all. Some of them sell fat cakes, do food gardens, work at cash loans, make beads, depend on their husbands or parents, do piece jobs or knit jerseys. Many volunteers were recruited by retired sisters or sisters at clinics from the Department of Health. Some initiated their organisations from their churches, and belong to burial societies or church groups. "Thusong Health Project in Pretoria offers services to sex workers. Some sex workers want to change their job. We are now working on establishing a job creation project for them, starting with dressmaking". *Having to cater for all needs of the patient and family* �The problem is that your patients become fully dependent on you. On your visit you find that they do not have food, and they can�t take the medication you bring them without food. Even when their condition is such that they need to see a doctor, their family has no money for transport. They live in conditions where there is no piped water, and you have to carry many buckets of water into their room so that you can wash them. You also leave sufficient buckets of water in their room so that a family member can wash them for the two days that you will not be visiting. On the third day you however find that no-one washed the patient." "Although you have explained to your patient and the family about how home based care work, they are waiting for you as their saviour. You wonder now, how should you influence the family?" "Most of us have five patients whom we visit three times during the week. The family however calls us over weekends to attend to a crisis and to do the patients� dressing". "One of my patients once asked me for money to buy some fruit on his way to the hospital but I refused. Thereafter I felt so guilty that I bought a bag of oranges and sent it after him to hospital". "It is difficult to decide when to give and when not and dealing with your guilt. There is this bible story about the women who refused to help this stranger who asked for help, because she was waiting for Jesus to come to her door. But thereafter she found that the stranger whom she rejected was Jesus". "There was this one patient of ours who lay dead in her bed for three days, her baby still sucking and the husband was just sitting there drinking. This made me feel disturbed". "Another patient�s bedsores were that septic that the room had a smell. When I went to see my doctor, I cried and wanted him to wash the smell from my face". "The husband says �you stole my wife� when you refer her to a hospice. The husband is not dealing with the illness." "Our patients are the poorest of the poor, they give use many complaints and always wants something to eat. With no support from elsewhere, it now looks like it is your burden. The Health Department should support home caregivers and not leave them empty-handed. They should give us food parcels to hand out". "Hospitals dump dying patients on you and the care giver is being accused when the patient is worse. Caregivers get burnout and frustrations because families are not helpful and start to blame care givers if something happen to their sick person. They load all their problems on the caregiver especially after the death of the patient". "At times when I find my patient being angry and the family is also angry with him, I feel trapped between them not knowing what to do - how do I create a peaceful environment, how do I deal with powerlessness and anger?" "The patients that are referred to us are critical. Often their families abandon them and the hospital does not treat them - they are now dependant on the home care giver." "We have problems that we don�t know how to solve, like transport for patients and money for it. We go from pillar to post to get someone to offer a car, an ambulance and a donation to pay for the petrol. We are too few - we cannot reach everyone. If policy makers could see how organisations are struggling, do a research of organisations. People down here, their organisations have nothing. People up there should see and touch links down here. We should get a push, moral support. It is dark down here - someone should give light. We need support, even our youth". *The disabled* "Many of the families that we care for have problems with disabled members at home. For example, this one granny is taking care of her daughter�s child who is mentally disabled. She cannot send him to special school because she says she has no money for school fees. She says the Social welfare cannot help her, and she cannot remember with whom she talked. When I asked her out about her problem to get the child�s disability fund, it came out that the child does not have a birth certificate, and the mother in Johannesburg does not cooperate, and the social worker here does not do home visits." "There are no wheel chairs for people with stroke". *Dealing with denial* "People move around, especially after they had tested HIV positive. They cannot face their families and their friends reject them". "There is this one youth that just sits with his head in his hands. When I try and talk to him he chases me away". "My one client is HIV positive, but she does not tell her husband". "This year I buried four girls from one boyfriend. It is difficult to deal with denial, one way that works is to just keep on giving information and to make sure that people know where to get help and support". *Recognition and support from nurses, doctors and social workers - some successes and some let downs* "We as care givers, are committed to do our work in the community voluntarily and the people we serve have no food. The policy of DOH is that we care and support the people at home as hospitals are full with few available beds. However, when we visit the homes of our patients, we are faced with no travelling allowance and no material support to assist our duties or the needs of our patients". "Nurses ignore us when we want to assist them. Some even use abusive language that makes us angry. We even feel like giving up because we are not getting any incentives for doing the work we are doing voluntarily". "Some doctors are supportive and even treat our patients for free as long as the caregiver is present". "Social workers are problematic - they always have an excuse that they have no transport to visit patients. So the caregivers are pressurised to do something for the patients and have to pressurise social workers to do something". "Our caregivers always ask about vacant houses that could be used for home care or hospice. With their efforts we will in future run our own hospice in Soshanguve. Already, Legae Clinic donated 20 beds and a 13-roomed house has been given to us. We are just waiting for the finalisation of papers". "Our caregivers care for all patients with all their sicknesses at home. They thus underwent a three-day DOTS workshop at Tlamelong Clinic. 20 caregivers in 2 groups attended the workshop. No transport funds were provided. They were however grateful of the training opportunity provided to them". "We believe that networking and partnership with all stakeholders are important. So caregivers are taking initiative to introduce themselves so as to get moral support and donations, to be able to help those in need." "Another problem with social workers is that they are absent in new settlement areas - they quit to work in the city". "A big problem is that in some of our areas the social workers and clinic sisters do not recognise our counsellors, even though they received training through T-Net. The Department of Health should introduce them to the clinics". *Hospices, orphanages and child headed families* "There are few hospices and many orphans are left to fend for themselves and turn to the street". "One AIDS patient died and lefts four kids, who were taken to their uncle. The second-born did not get along with him and stayed at the shack. She got raped, but runs away when I approach her". "Some children are left alone, no one to support them with food and everything they want. Children no longer go to school. Some orphans do not have birth certificates and if we want to help them to get some grants this becomes a problem. There is also a problem for those who are from 7 years and up - they are not allowed to get any grant". *Voluntarism and incentives* "Some of us get incentives such as a transport allowance, R 500 for voluntary work and a diploma in Home Based Care and peer counselling." *Co-optation of People Living With AIDS who serve as care givers and HIV/AIDS counsellors* "We, as the Success Support Group don�t have the resources to take care of our family and taking care of our People With AIDS (PWAs). Our group does counselling and awareness raising, home and hospital visits and exhibitions. And the most important thing is SUPPORT - PWAs need moral support. As the Success Support Group, we have a big big problem about people wanting to make money through us PWAs. For instance, an individual started a project for PWAs through F-Company, S and Child Welfare. While he was looking forward to satisfy his needs and to use PWAs, we gained nothing even though we were bribed by his offer to give our children money for school and pre-school. Many people advised us that we must be careful of him and that he was no longer working at S but still used the name of F-Company. Another example is M-Hospice who gets food donations from W for PWAs while PWAs get nothing. The Success Group is trained to do counselling but while M-Training do accommodate us with office space, they do not provide for the use of other facilities such as telephone and fax. Worst of all, they ignore us and invite people from outside to do counselling. The other problem is when there is an AIDS awareness event, we volunteer to help them but at the end of the day we are nothing because they don�t even give mention of our names or recognise our group. M-H gain funding from our AIDS status - this, they do by expecting us to disclose our status at short notice to visitors for R 50, we however feel depressed and used thereafter." *Common themes pertinent to voluntary care work policy and funding* The care workers and I highlighted the following themes from their diaries and our collective discussion: Caregivers cater for all needs of the patient and family - social welfare, economic, physical and psychological health Their services are dependent on good linking and co-operation with doctors, sisters, nurses, social workers, psychologists and their organisations Voluntarism requires incentives and material support Care givers do an excellent job in taking care of their patients and providing information to family members to assist them to deal with diseases Hospices and orphanages are lacking and are being developed through government-community organisation The disabled and resources for them require urgent attention Care givers, the role of the community and their organisational structures (eg church groups), are not always given the recognition they deserve, and are often abused and co-opted for the selfish needs of the health professional and the NGO sector Developing organisations, often lacking in resources and ability to secure funding, are not necessarily unskilled or ineffective in the services that they offer to the public. My subsequent progress I thought that an approach of information exchange would facilitate a response from government, only to find that our government contact persons claimed that they had not received our report. Subsequently, the manager of T-Net arranged a meeting with a managing departmental official, and invited some care workers and me to attend. At this meeting I was surprised to learn that it was T-Net�s sponsorship that was stopped, and not all small organisations as I were made to (or had chosen) to believe. The government official, with whom we had a meeting, also informed us that the department never requested "debriefing sessions" for care workers. She however thought that government workers should first be engaged in action learning. She also warned that we were consulting "the wrong officials", and that T-Net should never have received funding because their proposal was weak. I could not help feeling somewhat mislead and paranoid about the situation. What happened seemed to me a repetition of my own story that I tended to be eager to help others, only to let myself to be abused by individuals or the system. Did I get the story wrong from the manager of T-Net? Was the department "full of politics"? I subsequently consoled myself by letting go of worrying about the whole incident - not to become trapped in a power play with others. No one in a development context wants to be told what to do and how to behave. Perhaps, it would help others and myself if I would stay focused on free information exchange. Subsequently, from a meeting with health professions by the AIDS directorate about their HIV/AIDS care programme, it did appear that some of the issues that were raised by our report were receiving attention. My participants and I had voiced our concerns about home-based care and perhaps we were being heard. On a follow-up, some of the home-based care NPOs also informed me that they had started regular meetings where their care workers share and reflect on their work experiences. However, others maintained that they missed that networking they had with care workers from other organisations and wished for a more collaborative form of debriefing. What does my results mean in theory? The virtual conference page on "Something for Nothing" encouraged me to wonder about the costs and gains of voluntary work for each participant involved - the client of the home-based care worker, the volunteer, the NGO management, government, professionals � Are we building a "predatory [health care] culture" of "stalkers and victims"? (McLaren, 1995, as cited in Critical Methods Webpage). (I have placed my additions to quoted texts in brackets). What kind of traps do we set? I agree with Kevin William, who had posted a comment on my abstract, that one should be wary of just blaming "the government". None of us really want to be obstructionist. A blaming approach would also further a power struggle, holding in place behaviours and relationships that were problematic in the first place. We would thus maintain "human development [as] � a unique set of tactics through which power proliferates and extends itself beyond the range of other development strategies" (Vaughan M Dutton, Subjects of Development, virtual Critical Methods Conference). As DJ had highlighted: "Perhaps we are all predators [and victims] - academics, home workers, nurses, dr's, politicians?". The problem of power, voice and the co-option of community members by those dominant for their egotistic needs have been major concerns for participatory researchers in the development context (Hall, 1992). Many discussions on civil society focus on different kind of institutions or associations, their behaviour and the relations between them. Questions have been raised about how the policies of government and international aid policies affect the health care system and the work done by volunteers and community health activists in developing countries. Relatively little attention is however given to the question what actually motivates people to found certain institutions or to get involved in them, e.g. to become an �activist� (Buijs, 2002) or a voluntary care worker. From a constructivist perspective, each community care practitioner has a unique tendency to act (and be trapped) in a certain way. Our tendencies are closely related to the assumptions and myths that we hold about the world and how we should operate upon it. Analysing the care workers� frustration and their diary entries, they appeared to gravitate toward the following tendencies and virtues: Filling in for � Catering for all needs Sympathy Guilt Powerlessness and anger In need of moral support Morality Perseverance Being abused Loving kindness I gather that many of the care workers, like me, tend to get trapped in the moral domain. Perhaps, in our eagerness to help others we compromise ourselves. Our uncritical support of the government�s new home-based care approach (an ideology) puts us at risk of becoming victims of the (our) approach. Thus, each participant, including governmental official, NPO manager, professional and volunteer care worker could find it useful to start with self (Pistorius, 2000) and to engage in critical reflection about his or her approach to home-based care work. Perhaps care workers (like me) should not be so eager to help others and health organisations and look critically at the approach they are supporting. To my understanding, health care professionals, together with the Department of Health, non-governmental organisations and churches in poor communities in South Africa had recently taken a community-based approach to HIV/AIDS care and prevention. This approach rests on the assumptions that: Terminally ill people can be treated in the community - at home or in a hospice - and by volunteer workers who are community members Ideally, people prefer to die at home or in their community, maintaining personal dignity and contact with loved ones Community members can be trained to deliver community education, peer counselling and home-based care The HIV/AIDS epidemic will be curbed through community members� active involvement in treatment and prevention efforts Community-base care, primary health care and prevention are programmes that many of us fought for as part of our struggle for an equitable and community participatory health care system during the 1980s. Hence, it is understandable that we should rejoice that government together with community and professional players would embrace this approach. However, from my debriefing experience it is clear that home-base care not only poses gains, but also some serious emotional and financial costs. One would suppose that these costs were unexpected and that voluntary care workers engage and persevere in their work because they believe that home-based care could help them achieve the democratic health care system we all had in mind? What are the dynamics around voluntarism and home-based care in poor and developing communities? I found a fair amount of literature on voluntarism as a positive institution in society and how to be a good leader of voluntary workers (Cf. Voluntas. International Journal of Voluntary and Nonprofit Organizations; Nonprofit and Voluntary Sector Quarterly; and, Internet Nonprofit Center). There is a growing recognition of the importance of social capital in maintaining a healthy and vibrant civil society. Volunteering is viewed as a core component of social capital (Onyx & Leonard, 2002). In terms of my search, volunteer workers should benefit from an appreciative inquiry and the building of organisational skills. Perhaps my home-based care worker organisations and government are disorganised. I could however not find any reports on home-based care for the terminally ill that shows that the writer attempted to: (a) reflect in public on the difficulties that voluntary AIDS care workers experience, and (b) search for ways to deal with the challenges that care workers are faced with, e.g. care and support of the care worker. The few project reports that I had come across about this approach, were mostly presented in newspapers and newsletters. Some examples include: A report in the Sunday Times, August 25 2002, "They brought me back from death. Programme involved in row over UN funding takes the load off hospitals by treating HIV-positive people as outpatients" by Mawande Jubasi. During May 2002, Hospice Care Plus, Kentucky, received the innovation of the week, from The Peter F. Drucker Foundation for Nonprofit Management, for expanding hospice care to terminally ill patients who wish to remain at home while also offering individuals the opportunity to develop marketable skills (<http://drucker.org/innovation/innov-of-week/>). These care workers were paid by the family for their home care work, which included cleaning the patient�s room and doing house sitting. I also attended the African Conference on the Social Aspects of HIV/AIDS Research (SAHARA), organised by the Human Science Research Council, 1-4 September 2002 and was impressed that there were various presentations about home-based care projects (Cf. Modiba, 2002; Williams, 2002; Mundeta & Gomo, 2002;). These presentations however confirmed my concern that presenters mainly talked about their positive achievements. Only one presenter (Williams, 2002) highlighted that they were planning to study the impact that home-based care work has on youth care workers and that for their support they had tried to link youth care workers up with older care groups. The above-mentioned reports offered the following perceptions about the gains for different players from community and home-based care: Governmental clinics and hospitals can keep patient admissions down. The costs of health services and hospitalisations will be lowered. Community members who become volunteer workers gain skills and contacts that will make them employable. Volunteer workers are trained and recognised by reputable community and government organisations. Volunteer workers gain a sense of meaning and respect through their altruistic offering of community services. The terminally ill and their families can gain support for themselves and their family from volunteers whom they can respect and trust as of good reputation. HIV-positive people can secure support, for themselves and their family members, by offering their voluntary services to AIDS service organizations. Some of the SAHARA presentations had shed some light on my "debriefing experience". A presentation by Swartz (2002), on "The impact of local government HIV/AIDS programmes in South Africa", showed that home-based care projects are from amongst the most popular HIV/AIDS projects that community members embark on nowadays. Another enlightening presentation was by Mabetoa (2002), the HIV/AIDS director of the Department of Social Development, who gave a critical analysis on "The social impact of HIV/AIDS and the growing demand for social development services". She highlighted that although there was a growing demand for social development services at local community level, this were yet to be incorporated into HIV/AIDS programmes. HIV/AIDS programmes often focus on physical aspects, she said. The "Integrated Community Based Care and Support Model" is "an ideal situation and making it work has many challenges". Perhaps then, because it is a new approach, participants tend to emphasise positive gains, letting "negativities" remain in the background. What I had found helpful though, was to contrast how stories of home-based care work differed to my "debriefing experience". For example, the Red Cross in Southern Africa (Mundeta, 2002) had strong organisational resources - such as being international and successful in terms of funding - and had provided incentives and recognition for volunteers. These incentives include, an allowance, a bicycle, a uniform, food parcels for the volunteer as well as for patients, support groups, and networking conferences for volunteers. Furthermore, Vicky Timm, who made a presentation on "Being a hospice worker: Jay�s story", at the Critical Methods Conference, showed that her hospice worker was basically happy. His story contrasted with my care worker experiences - Jay�s hospice organisation had provided him an allowance, had support groups for care workers, and Jay did not have to grapple with challenges such as not having access to piped water, electricity, ambulances, social workers, medical services, being unemployed, etc. It is tough to work in a poor community. I urge anyone to try to do in a poor community what they are doing successfully in an affluent community. Health care is more expensive in poor communities; it is more expensive to maintain your health when you have no access to water and electricity. From my "debriefing experience, it seems that government and NGO health care organisations tighten their belts, and the volunteer workers pay the costs. Is that fair? Is that sustainable? As one Critical Methods Conference participant pointed out, their volunteer organisation collapsed because members were expected to use and offer their own resources to carry organisational activities. This confirm my suspicion that volunteers tend to be eager to help others, and support popular ideas, only to be abused by dominant individuals or the system. Unemployed voluntary care workers seem particularly at risk of being subjugated to the dominant ideas and perceptions that their programme planners hold. Thus, structural inequalities in their community and workplace are being maintained under the ideological banner of "community-based health care" and "democracy". Care workers may thus (tend to) become the victims of, and fall prey to, the community-based care programmes that are instituted by those in power. To turn an oppressive system around, care workers should be assisted to have "the knowledge, skills, values and attitudes to question, understand, interrogate and eventually act as change agents of structural inequalities in their place of employment" (Giroux, 1988, as cited on Critical Methods web page). Government officials, professionals and NGO managers should question whether their application of a new approach to things do not maintain the status quo (i.e. inequality), and do not make matters worse for others. It could also be helpful to reflect critically: Why do we expect home-based care work to be voluntary? Does voluntary work mean "no pay", or, a "not-for-profit" payment? Why is it that most home-based care workers are female? Do we expect from them to clean people�s rooms and to clean their wounds for free, because they are women? HIV/AIDS programme planners should thus take care of the values and psychosocial aspects underlying their approach and include care of the care worker into their budgets. What should be done? How should participants of home-base care take care of their approach and care of care workers? It could be helpful if all of role players engage in a process of critical self-reflection and share their reflections collectively. By starting with self, participants take cognisance of their personal tendencies and how this may interfere with their progress. Such a process may make it less likely that participants engage in blaming or defensive interaction, perpetuating a struggle approach to life. A sharing of reflections, including our stories of experiential learning and trial and error, are bound to lead to positive responses from others. Take for example the food parcels that home-based care workers can get for their clients from the Department of Welfare nowadays. One of the aspects of the debriefing sessions that the care workers valued most was that they could share their experiences and self-reflections with people outside their usual circle of contacts. My reflections were furthermore aided when I could share, and contrast, my experience with others elsewhere and during the Critical Methods Conference. It is through noticing how our experiences and contexts differ, that I can see a bigger picture. For now, I believe that we can create knowledge both individually and collectively through an appreciation of difference in Bateson�s sense - knowledge is information that makes a difference (Cf. Bateson, 1972, 1979). Cherishing one�s own and other people�s information (their difference and creativity), may offer an alternative and also more resourceful and socially responsible way of dealing with home-based care. References Bateson, G. (1972). Steps to an ecology of mind. New York: Jason Aronson. Bateson, G. (1979). Mind and nature. New York: Dutton. Buijs, G.J. (2002, July). Sources of Inspiration: Toward a Comparative Perspective on Why People Get Involved in the Third Sector. Paper presented at the International Society for Third-sector Research Fifth International Conference, Transforming Civil Society, Citizenship and Governance: The Third Sector in an Era of Global (Dis)order, Cape Town, South Africa. DJ, (2002, September). Comments on abstract. Voluntary HIV/AIDS home-based care work traps = a predatory health care system? Presented on 8th^{Qualitative virtual Critical Methods Conference, Something for Nothing: Subjectivity and society in the New Economy, Centre for Applied Psychology, University of South Africa, Pretoria.} Dutton, V. M. (2002, September). Subjects of Development. Abstract presented on 8th Qualitative virtual Critical Methods Conference, Something for Nothing: Subjectivity and society in the New Economy, Centre for Applied Psychology, University of South Africa, Pretoria. Giroux, H. (1988). The transformative intellectual. Cited on the 8th Qualitative virtual Critical Methods Conference, Something for Nothing: Subjectivity and society in the New Economy, Centre for Applied Psychology, University of South Africa, Pretoria. Hall, B.L. (1992). From margins to center? The development and purpose of participatory research. American Sociologist, 23(4), 15-28. Hospice Care Plus (2002, May). The Companion Program. Cited on The Peter F. Drucker Foundation for Nonprofit Management, Drucker Nonprofit Innovation Discovery Site, <http://drucker.org/innovation/innov-of-week/> and http://pfdf.org/innovation/innovation/innovation.asp?innov-id=159. Internet Nonprofit Center, Infromation for and about nonprofits, http://www.nonprofits.org/ William, K. (2002, September). Comments on abstract. Voluntary HIV/AIDS home-based care work traps = a predatory health care system? Presented on 8th Qualitative virtual Critical Methods Conference, Something for Nothing: Subjectivity and society in the New Economy, Centre for Applied Psychology, University of South Africa, Pretoria. Mabetoa, M. (2002, September). The social impact of HIV/AIDS and the growing demand for social development services. Paper presented at the African Conference on the Social Aspects of HIV/AIDS Research (SAHARA), Human Science Research Council, Pretoria. Jubasi, M. (2002, August 25) They brought me back from death. Programme involved in row over UN funding takes the load off hospitals by treating HIV-positive people as outpatients. Report in Sunday Times, p.13, South Africa. McLaren, P. (1995). Cultural Pedagogy and Predatory Culture. Book cited on the 8th Qualitative virtual Critical Methods Conference, Something for Nothing: Subjectivity and society in the New Economy, Centre for Applied Psychology, University of South Africa, Pretoria. Modiba, P. (2002, September). The integration of HIV/AIDS Care and Support into primary health care in Gauteng Province (South Africa). Paper presented at the African Conference on the Social Aspects of HIV/AIDS Research (SAHARA), Human Science Research Council, Pretoria. Mundeta, B. & Gomo, E. (2002, September). Red Cross Societies and HIV/AIDS: Southern African experiences and plans in prevention and care. Paper presented at the African Conference on the Social Aspects of HIV/AIDS Research (SAHARA), Human Science Research Council, Pretoria. Nonprofit and Voluntary Sector Quarterly, Sage Publications, Inc. Onyx, J. & Leonard, R. (2002, July). The relationship between formal and informal volunteering: A social capital framework. Paper presented at the International Society for Third-sector Research Fifth International Conference, Transforming Civil Society, Citizenship and Governance: The Third Sector in an Era of Global (Dis)order, Cape Town, South Africa. Pistorius, A.G. (2000). Participatory community development - a networking approach. Unpublished doctoral thesis, University of South Africa, Pretoria Swartz, L. (2002, September). The impact of local government HIV/AIDS programmes in South Africa. Paper presented at the African Conference on the Social Aspects of HIV/AIDS Research (SAHARA), Human Science Research Council, Pretoria. Timm, V. (2002, September). Being a hospice worker: Jay�s story. Paper presented on 8th Qualitative virtual Critical Methods Conference, Something for Nothing: Subjectivity and society in the New Economy, Centre for Applied Psychology, University of South Africa, Pretoria. Voluntas, International Journal of Voluntary and Nonprofit Organizations, http:// www. Istr.org/pubs/voluntas/ Williams, E. (2002, September). Increasing access to care and support for PLHA: Building the capacity of youth caregivers in rural Zambia. Paper presented at the African Conference on the Social Aspects of HIV/AIDS Research (SAHARA), Human Science Research Council, Pretoria.
	Peer reviews of this paper appear below.
	Review 1 Dear Annalie This is the first time that I engaged in a virutal review environment. Maybe my comments and suggestions are not applicable, but I would like to learn from you and the process. I read about three stories in your article. The first story is about the volunteers, the second about the process of involvement and the third story is your voice about your experiences as well as a reflection on the process. These three story lines are sometimes more visible than others. I would have appreciated a clearer description of your own story. In your abstract I wondered by whom the debriefing sessions were requested? What is the meaning of "a developmental orientation"? What was the "model for care worker self-development"? A richer dscirption of the contexts in which the care workers worked would have been helpful to understand the issues that they deal with. And I assume they were all women? Where they? Can I read "action learning" and "experiential learning" as describing the same concept? How did the group decide what topics to discuss? You said that the aim according to you was that they hand an opportunity to talk about their frustrations and traumatic experiences. I also saw something of a commitment and perseverance in the whole process. One of the issues that I also noted in the care workers verbal transcripts was guilt feelings. I wondered how that contributed to their involvement in the caring for others and how it played into the dynamics of exploitation. How were the themes determined that you discussed as commen themes pertinent to voluntary care work police and funding? And I was wondering about the emotional "cost" involved? Kind regards Vera Roos
	Review 2
	Author reply Dear Vera, Thank you for your helpful comments. I made some clarifying changes in the text. Kind regards Annalie

1 Dec 2004 - -h1-Please check the sites about- Tons of interesdting stuff!!! -/h1-

10 Sep 2002 - would like to know more about care for care givers. Otherwise great ork done - uhiriwe mary