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Home-based care for people living with AIDS in Zimbabwe: voluntary caregivers' motivations and concerns Alexander Rödlach

a

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Department of Sociology and Anthropology , Creighton University , 2500 California Plaza, Omaha, Nebraska, 68178, United States Published online: 08 Apr 2010.

To cite this article: Alexander Rödlach (2009) Home-based care for people living with AIDS in Zimbabwe: voluntary caregivers' motivations and concerns, African Journal of AIDS Research, 8:4, 423-431, DOI: 10.2989/AJAR.2009.8.4.6.1043 To link to this article: http://dx.doi.org/10.2989/AJAR.2009.8.4.6.1043

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African Journal of AIDS Research 2009, 8(4): 423–431 Printed in South Africa — All rights reserved

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AJAR

ISSN 1608–5906 doi: 10.2989/AJAR.2009.8.4.6.1043

Home-based care for people living with AIDS in Zimbabwe: voluntary caregivers’ motivations and concerns Alexander Rödlach

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Department of Sociology and Anthropology, Creighton University, 2500 California Plaza, Omaha, Nebraska 68178, United States Author’s e-mail: [email protected] Similar to the healthcare systems of other resource-constrained countries with a high prevalence of HIV and AIDS, Zimbabwe’s healthcare system encourages communities and non-governmental organisations (NGOs) to support the public healthcare sector by initiating home-based care activities and training volunteers to assist households in caring for individuals living with HIV. As part of the response, groups of volunteers were formed to provide basic material, social, nursing, and other kinds of support to members of AIDS-affected households. My research in Bulawayo, Zimbabwe, shows that motives for volunteering included: 1) religious values; 2) desire for prestige; 3) empathy derived from witnessing the suffering caused by AIDS illness; 4) hope of securing caregiving support in the future; 5) hope of enlarging one’s network of those with access to political and economic power; and 6) hope of receiving material benefits in the future. This study further documents that volunteers’ commitment to caregiving diminished between the early 1990s and 2009 due to: 1) the stigma of HIV and AIDS; 2) lack of funding, preventing volunteers from providing the needed care; 3) the large numbers of sick who are discharged from hospitals and clinics into home care; and 4) volunteers’ ‘burnout.’ Strengthening volunteers’ motivations for caregiving and addressing their concerns are crucial for providing effective care for individuals living with HIV or AIDS. In Zimbabwe, improvement of voluntary caregiving programmes requires better integration with the national healthcare system at the clinic level as well as collaboration with NGOs, community leaders and church groups, which have the potential to positively influence volunteers’ commitment to caregiving. Keywords: community-based care, developing countries, HIV/AIDS, home visits, primary healthcare workers, volunteers

Introduction In Zimbabwe, where about 15% of adults are estimated to be HIV-positive (UNAIDS, 2009), home-based care programmes, also called community-based care programmes, play a vital role as an overwhelmed public health system fails to cope with the demands of the HIV epidemic (Health and Development Networks, 2008; Physicians for Human Rights, 2009). Across southern Africa, these programmes aim to provide a continuum of care for both patients and families, addressing their material, physical, psychosocial, palliative and spiritual needs (CADRE, 2002; World Health Organization, 2002). In their ideal form, they consist of formal and informal components (Kipp, Tindyebwa, Rubaale, Karamagi & Bajenja, 2007). The formal part comprises healthcare professionals who admit patients into the home-based care programmes and, when the need arises, carry out home visits. The informal component is represented by family members who are the principal caregivers for AIDS patients at home. Groups of trained voluntary caregivers link the formal and informal parts of home-based care, mediating between the clinic and the home, while providing basic in-home care for people living with HIV or AIDS (Marston, 2003; Jacques & Stegling, 2004).

In the early 1990s, groups were formed in Zimbabwe in response to the call for home-based care programmes (Jackson & Mhambi, 1992; Woelk, Jackson, Kerkhoven, Hansen, Manjonjori, Maramba et al., 1997; Mupedziswa, 1998) and over the years the government has developed policies, standards, and training manuals for home-based care (Government of Zimbabwe, 1999, 2001, 2004 and 2005). The growth of such groups has resulted in the discharge of increasing numbers of AIDS patients to be cared for in their homes (Gwatirisa & Manderson, 2009). Despite substantial efforts, former Minister of Health and Child Welfare David Parirenyatwa admitted that the overall impact of home-based care programmes has not been satisfactory, mainly due to a lack of resources (Parirenyatwa, 2008). For patients in Zimbabwe, ‘home care’ often means ‘home neglect’ (Jackson & Mhambi, 1992). Since the early 1990s, the programmes have become increasingly dependent on churches, non-governmental organisations (NGOs) and community resources, with only minimal material and financial support from the government or the international community (Health and Development Networks, 2008). This article focuses on the groups of voluntary caregivers who link the formal and the informal components of home-based care in Zimbabwe. Particular attention is

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paid to volunteers’ motivations and concerns. I argue that addressing these will strengthen the commitment to voluntary caregiving and subsequently the quality of home-based care of individuals living with AIDS in Zimbabwe.

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Methods This research is based on long-term observations of home-based care programmes between 1991 and 1998 and during 2000, 2003 and 2009 in Bulawayo, the second largest city in Zimbabwe. The data were systematically collected by me and three research assistants (one woman and two men of varying ages and with different ethnic and educational backgrounds). The data were collected within the context of a larger study on explanatory models regarding the HIV epidemic in southern Zimbabwe. While this could have potentially led to overlooking important caregiving themes, our long-term observations and interactions with caregivers as well as the open-ended nature of the interviews and informal chats eliminates this possible limitation. We conducted individual interviews as well as focus-group discussions using both open-ended and semi-structured formats (see Bernard, 2002). The interviewees were approached in their homes as well as during caregivers’ group meetings; therefore they comprise a non-random sample selected on the basis of convenience. As a result, the conclusions of this study are more reliant upon the informants’ cultural competence than on the data’s statistical representativeness of the Zimbabwean population (see Handwerker, 1998; Bernard, 2002). After verbal informed consent was obtained, the interviews were conducted, primarily in Ndebele, in which I am fluent. Ndebele is the most commonly spoken language at the research site. The roughly 220 interviews1 with voluntary caregivers, people living with HIV or AIDS, health workers at clinics, and township residents were tape recorded. No personal identifying information is contained on the tapes. The interview texts were transcribed and coded with the help of a qualitative text-analysis software programme, ATLAS.ti (Scientific Software Development, 2004). Following a grounded theory approach (Strauss & Corbin, 1998), I identified themes within these codes and examined how the themes were linked. Informant responses that related to the central themes were translated into English. Finally, the interview data were collated with observational field notes, archival sources and data from mass media research. Research site Of the 220 interviews, 155 were conducted in a section of one of Bulawayo’s townships, Nkulumane. Additional observations and interviews were done in other townships: 56 in Magwegwe and Emakhandeni, and nine in Nketa and Tshabalala.1 Nkulumane is a relatively new township; the oldest sections were constructed in the late 1970s (Kaarsholm, 1994). The township is relatively large, with a 1994 population of more than 87 000 (Department of Housing and Community Services, 1995), which has since grown to an estimated 100 000 (Rödlach, 2005). Nkulumane

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is subdivided into four municipal wards. Because I was well received in Ward 20 by the voluntary home-based caregiver groups and other members of the community, I selected that ward for intensive interviewing. For observations and interviews, we frequently went outside Ward 20 — as did the residents who moved through various wards when visiting friends, attending the local clinic, going to school or shopping. There are no geographic boundaries separating Nkulumane’s wards, which are generally comparable in ethnic, educational, religious and socioeconomic terms. I estimated the ward population to be less than 30 000,2 as the ward had about 3 300 houses and an average household size of 5.5 members (Rödlach, 2005). Many houses were occupied by two households, the second generally with fewer people. The ward’s population is low-income, strongly skewed towards a younger age group, with heads of households generally in their 30s and 40s, and composed of various ethnic and religious groups. The residents were relatively well educated; an estimated 26% had continued their schooling beyond secondary school (Rödlach, 2005). Voluntary caregivers Overall, the voluntary caregivers in the study area did not appear to differ much from the general population in regard to ethnicity and levels of education. However, they seemed to exhibit several distinctive characteristics. The overwhelming majority of volunteers were women. Most were actively involved in their church or in women’s associations at the churches, and the majority were in their late 40s and 50s. Typically, if they had children at home, these tended to be of school-going age or older, thus in general they were not preoccupied with looking after young children. Many voluntary caregivers lived in a stable relationship with a spouse who contributed financially to the household, but many others were widowed. The voluntary caregivers tended to own the houses they lived in; hence, they seemed not overly vulnerable in economic terms. Support for people living with AIDS: home-based care groups in Nkulumane Various home-based-care programmes that were operating in Nkulumane sought to address the needs of households with people living with AIDS. The most visible programmes were a Catholic home-based care group, the City Council group, and the Revival of Hope, which had a strong political element and was dominated by War Veterans.3 Together, these groups were founded between 1992 and 2002 and had between 10 and 30 voluntary caregivers. In 2003, each group looked after 10 to 30 individuals in various stages of HIV disease. There was also a relatively small group associated with the Brethren in Christ Church as well as a team organised by the Seventh Day Adventists who cared for fewer people. In most cases, the voluntary caregivers had been trained by a municipal community nurse, the Red Cross, or other trainers provided by faith-based organisations. At the same time, members of the voluntary care groups taught each other. I participated in a training session of one of the groups, during which members taught each

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other how to counsel patients and their families, what material help they could offer, and how to teach patients and their relatives about proper nutrition and hygiene. During training sessions and public events, the voluntary caregivers showed great dedication and determination to support patients and their families. For instance, in 2003 I observed the City Council group during the official launching of an HIV/AIDS-awareness programme for the two municipal wards, held at the Maqhawe clinic. The voluntary caregivers enthusiastically presented themselves and the purpose of their group through dancing and singing a song with the following refrain4: ‘Oh, send us to the sick, even though it is difficult. We do not discriminate against them. I ask for the phone, I call the home-based care group. It is not easy; it is tough when you are looking after someone who is sick, mothers, fathers.’ The public image of highly motivated volunteers who visited anyone in need, however, did not reflect the reality in Nkulumane. The Ward AIDS Action Committee (WAAC) was supposed to coordinate and supervise these groups as well as organise the disbursement of government funds to them. However, the WAAC was generally ineffective, inefficient and lacked significant involvement by members. Furthermore, War Veterans dominated the group and used the committee as a venue to strengthen their influence in the township. The voluntary care groups operated independently and did not pay much attention to the WAAC (although if the WAAC had made funds available to the groups, its influence might have been greater). During my research in 2003, most of the groups did not depend on funding from the WAAC. The church-based volunteer groups, in particular, had their own sources of funding and were able to compensate the caregivers for their time with small monetary remunerations. The WAAC was also supposed to offer material support for people living with HIV or AIDS in the ward and to purchase corn meal and cooking oil for the voluntary caregivers. In 2003, even the most basic commodities were in short supply and most households spent considerable time trying to obtain them. The intention of providing the volunteers with these items was to free them from waiting in line for hours to purchase them; instead, they were supposed to use the time to support family home-based caregivers. Due to the WAAC members’ lack of commitment and because of confusing bureaucratic procedures, commodity purchases were made only once or twice in Ward 20 during 2003. The WAAC also failed to coordinate the efforts of the various voluntary caregiver groups and the healthcare professionals at the local clinic. Consequently, voluntary caregivers did not have high expectations of the WAAC, and in 2009 none made a single reference to the organisation during our interviews. The downside of the ineffectiveness of the WAAC was that the caregiver groups necessarily worked independently and therefore duplicated their efforts. This shortcoming was recently addressed by organising voluntary home-based caregiving through the local clinics. Even though different organisations train the volunteers and may keep separate organisational structures for their volunteers, the actual caregiving is now organised at the clinic and according to the areas served by the clinic. Volunteers now meet

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regularly at the clinic, receive more training from health workers, are given information about patients who are sick, are asked to follow-up on these patients and then give feedback to the clinic personnel. In many regards, the volunteers fulfil the role of community nurses. Due to the shortage of staff and funding, many clinics in Bulawayo no longer have a community nurse available to visit patients at home, a situation that was frequently lamented by the interviewees: ‘We [the voluntary caregivers] give him [a bedridden male] some food, but there is not a single nurse that is visiting him. He is just staying at home and is waiting for us to visit him and chat with him. The nurses know that he is suffering at home, but they do not come to help him. What they did long ago, going around the neighborhood and visiting the sick; they do not do this anymore.’ The voluntary caregivers therefore take on some of the responsibilities of a community nurse, allowing the understaffed and underfunded public healthcare system to provide better care for people living with HIV or AIDS. The following summary of my field notes describes a typical example of the work of the voluntary caregivers: I was on my way to meet a group of women in Nkulumane in May 2003. The women were volunteers who looked after families where individuals with clinical AIDS were cared for at home. Most families could not afford hospital treatment for sick individuals, but rather tried their best to ease the patient’s suffering at home. Often spouses and elderly parents carried the burden of caregiving. They washed the patients several times a day (necessary because of the persistent diarrhoea that typically accompanies AIDS illness); they spoon fed patients unable to feed themselves; and administered the medications they could afford to purchase (however, most did not have the necessary funds). We called on a man in his early 30s. His three young children greeted us in the front yard. They were supposed to be in school, but household funds had been drained by the man’s illness, and no money was available for school uniforms and fees. Standing in the entrance, I saw only an old sofa and small table in the sitting room; a few yellowed magazine cuttings decorated the rough walls. It appeared that family belongings had been sold to pay for the man’s treatment. The foul odour was common in households with AIDS patients suffering persistent diarrhoea, where even frequent washing of soiled clothes and blankets cannot remove the odour. We heard the man coughing in another room. His wife, visibly worn out from months of caring for him, ushered us in to see her husband. We saw a man exhausted through physical suffering, who had lost all hope of improvement. He appeared depressed; he feared that his family faced poverty and starvation. The voluntary caregivers consoled him through their prayers and left behind some painkillers, disinfectants and ointments. They gave his wife a few food items and some laundry soap and promised to try to get the children back into school (see also Rödlach, 2006, pp. 1–4). Most of the home visits by caregivers that I observed followed a similar pattern: providing some material, spiritual, and psychological support to patients and their families. If

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clients had not been seen by a doctor for a long time, the caregivers provided them with a voucher that entitled them to a free consultation at the local clinic. If clients could not afford to send their children to school, the volunteers contacted a municipal programme that assists children from low-income households to go to school. If one of the parents had passed away, the children were enrolled in a supplementary feeding programme. Low coverage by voluntary care programmes in Nkulumane Although the voluntary caregivers visited many homes in Nkulumane, the number of active caregivers as well as the frequency of their visits did not sufficiently address the outstanding need. Ward 20 had less than 30 000 residents; without a doubt, there were more households with an individual with AIDS at home than the fewer than 80 households that were being visited by the voluntary caregivers in 2003; at the time, ARV treatment was virtually unavailable and it was common to see bedridden individuals being cared for at home. What’s more, caregiver groups operated independently during the early years of their existence. The activities of one group were not coordinated with other groups operating in the same area, thus their resources were not efficiently utilised. I met various individuals who were visited by voluntary caregivers from more than one group, while other people living with HIV or AIDS were not seen by any caregiver. The numbers of patients alone, however, do not accurately represent the impact of care. Some voluntary caregivers were better trained, had acquired better caregiving and counselling skills, and were able to provide more material support than others; some groups made home visits once a week, while others did so irregularly. My observations and interviews during the 1990s and in 2000 and 2003 revealed the low impact of voluntary care groups in the community: many households in townships in Bulawayo were unaware of the existence of these support groups. A consistent refrain among people living with HIV or AIDS was: ‘I haven’t met them yet.’ A similar lack of caregiver visibility has been documented in a different Bulawayo township (i.e. Palmiere, 2000), in other parts of Zimbabwe (i.e. Jackson & Kerkhoven, 1995) and in other sub-Saharan countries (i.e. Jacques & Stegling, 2004; Kipp et al., 2007). My observations and interviews in 2009 showed a significantly different picture. Bulawayo residents living with HIV or AIDS now had access to free HIV testing and ARV treatment, though there are shortages of drugs and waiting lists to begin antiretroviral (ARV) treatment. During the past year the government has scaled up its ARV treatment services, now covering about 19% of those individuals who were eligible for ARVs in 2007 (UNAIDS, 2009). Subsequently, the number of terminally ill individuals cared for in their own homes has decreased. Also, the lack of coordination among the different caregiver groups has been addressed and the various groups operating in Ward 20 now meet regularly at the local clinic. People visiting the clinic or accompanying a sick relative to the clinic are able to notice the volunteers there and are made aware of the volunteers’ services by the clinic personnel. The volunteers’

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training is now streamlined at the clinic and their efforts are being coordinated. However, my conversations with health workers at clinics indicated that they hesitated to make more extensive use of the volunteer caregivers. Some health workers pointed out that the volunteers were not well trained in caregiving, they might give the wrong advice to patients, and they were not reliable partners in care. While such views appeared rooted in problematic experiences with particular volunteers, the clinic-based health workers also felt that the volunteers intruded into their territory and competed with them. Although the volunteers generally welcomed collaboration with the health workers at the clinic, on various occasions they mentioned feeling disregarded by the clinic personnel as valuable partners in providing healthcare for people living with AIDS. This increased the sense of frustration they already felt due to the stigma of HIV and AIDS, an overload of cases, and the difficulty of providing adequate care and support to AIDS-affected households. Facing HIV and AIDS stigma A frequently mentioned concern of the voluntary caregivers was the stigma of HIV and AIDS, a concern likewise reported by voluntary caregivers in other African countries (see also Jacques & Stegling, 2004, p. 181). At times, the volunteers told me that, due to the stigma associated with the disease and the associated shame, ‘Family caregivers hide their sick family members when we are doing our rounds. Some of them have a bad spirit5 and we need to be very patient with them.’ Several of the volunteers mentioned that family caregivers sometimes feared to touch an AIDS patient and thus the family members did not provide adequate support for the patients, at times just waiting for the volunteers to feed and wash the patients. There is some indication that this is changing, as the following quote from a voluntary caregiver typifies: ‘When we began to volunteer we had a tough time. But nowadays people are used to us and trust us. Also, most of the patients are now open to reveal their HIV status to us.’ Interviews during 2009 indicated that the free provision of ARVs at municipal clinics, despite the waiting lists and drug shortages, contributes to the de-stigmatisation of HIV and AIDS. While HIV infection had a fatal outcome during the pre-ARV era, it is perceived today as a treatable, although incurable, condition, which has made caregiving significantly easier for volunteers. In Zimbabwe, HIV infection carries the stigma of immorality, promiscuity and prostitution, and this makes it difficult for volunteers to get access to homes. The voluntary caregivers frequently mentioned that people living with HIV or AIDS prefer being visited by a caregiver who lives outside the neighbourhood, since fear that a visit by a neighbour who is known as a caregiver will result in gossip about the sick individual’s reputation and supposedly bad character. Also, according to both people living with AIDS and caregivers, the sight of known home-care volunteers entering a house can alert neighbours to the presence of an individual with AIDS in the household, which may result in the social isolation of the households’ members. Because of this, many volunteers had stopped wearing uniforms and providing household members with items that could be traced back to the support group, such as paper bags

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with ‘AIDS’ printed on them. Like groups elsewhere in Zimbabwe (see Jackson & Kerkhoven, 1995) and in other countries (see Uys, 2003), they avoid identifying individuals as persons with AIDS and instead support all chronically and terminally ill patients. When I accompanied volunteers, we visited individuals who were bedridden due to cancer, paralyzed after an accident, incapacitated due to a stroke, or suffering from other serious chronic conditions. People living with AIDS were just one subgroup of individuals being cared for at home. The volunteers did not distinguish between the different conditions, but simply provided the necessary care, presenting themselves as concerned and supportive. Those associated with churches avoided suspicion because home visits and prayer are expected of Christians. Groups of committed Christians visiting the sick in their homes were a common sight in the townships; I frequently met them praying for bedridden individuals when I accompanied the volunteers on their rounds. Volunteers’ inability to address poverty at the household level The voluntary caregivers often could not provide much needed material support to the patients and households they visited. The caregivers frequently mentioned that they felt awkward about not being able to offer meaningful help. One voluntary caregiver expressed frustration this way: ‘The patients complain that they need food when they take medication. Some of the pills need to be taken with food. At the end they stop taking the pills because they do not have any food at home.’6 Such statements are corroborated by other recent reports (e.g. Physicians for Human Rights, 2009), and other researchers have made similar observations, pointing out that the act of visiting poor households lacking basic necessities and being unable to give hope of material relief is an aspect of care that volunteers find the most difficult to deal with (Defilippi, 2003a). A method of coping with this situation emerged from my observations of home visits with the volunteers: the less material help they were able to provide, the more spiritual support they gave. Where volunteers could not provide food or medication, they tended to strongly emphasize prayer for the patient. They told me that this gives hope to their patients when nothing else can be given to them. Nevertheless, coming empty-handed to a home lacking even the most basic items needed for medical care is discomfiting and frustrating. In the face of sheer hunger and poverty, counselling, advice, and prayer are just not enough. During 2000 and 2003, the church-based groups of voluntary caregivers in Nkulumane were generally able to provide basic material assistance to family caregivers. In contrast, members of other groups were often unable to provide material support to households they visited. Since efforts have been made to coordinate these care groups through the local clinics (observed in 2009), these differences have ceased to exist. All caregivers, irrespective of the group to which they belong, receive the same caregiving kit at the local clinic. However, this often means that the material support for people living with AIDS once provided by faith communities for their respective caregiver groups has dried up. The following quote echoes what various

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caregivers told me: ‘Some years ago we received food and other items for the patients, but these days we don’t receive anything from the church.’ As may occur elsewhere in southern Africa, the voluntary caregivers in Nkulumane are provided with kits that include simple and inexpensive basic drugs, personal hygiene items, and household items (Mabude, Beksinska, Ramkissoon, Wood & Folsom, 2008). However, due to the harsh economic conditions throughout Zimbabwe (IRIN, 2007; Health and Development Networks, 2008), the voluntary caregivers in Nkulumane often go without. Moreover, these kits are often assembled by international organisations, such as World Vision, without consulting with volunteers or considering the local circumstances. Most of the volunteers that I interviewed in 2009 lamented that the items in the kit were not really useful: ‘They give us Pampers [diapers] for the sick, one soap for washing my hands after caregiving and another one for the laundry, also toothpaste and brush, also gloves, one packet. This is what we are given. I don’t know what I shall do with the toothbrush. There is only a single one in the kit. Should I use it or the patient? All of this is useless. How can we help the patients with that! Just with gloves and Pampers!’ Another important issue was that the clinic health workers sometimes removed items from the standard kit. Reiterating what others had told me, one interviewee said: ‘In our home-based caregiver kits, there is Betadine, but the clinic removed it and the nurses told us that they will use it in the clinic. They also removed other items and said to us that we are not trained to use them. Not even a single tablet is inside the kit.’ While clinic personnel argued that this was done because of negative experiences with some volunteers (who had wrongly administered or misappropriated items) the volunteers asserted that such accusations are unfounded because they were familiar with these items, which are ones commonly used in their own homes. Furthermore, the caregivers could be held accountable for the use of these items by the health workers at the clinic; they argued that the real issue is that the clinic health workers don’t appreciate the work done by volunteers and essentially do not trust them. Case overload The main problem faced by all the home-based voluntary care groups, particularly during 2000 and 2003, was an overload of patients. Volunteer groups were founded at a time when the number of individuals living with AIDS was still relatively low, and highly motivated volunteers managed to visit patients and their families at home, regularly and frequently. With an increase in the number of AIDS patients, volunteers have become responsible for visiting more households. Caregivers resented feeling that what they do is comparable to a full-time job but not regarded as such. Members of all care groups that I visited expressed resentment that patients are ‘dumped on them.’ People living with AIDS mentioned that hospital personnel instructed their relatives to approach the voluntary care

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groups for help when a family member was discharged from the hospital. However, there was no communication between the volunteers’ groups and the hospitals. Ideally, AIDS patients should be discharged from the hospital into home-based care (UNAIDS, 1999; CADRE, 2002). In Bulawayo, as elsewhere in Africa (see Zimba & McInerney, 2001), I observed a disconnect between the formal and the informal component of home-based caregiving, as neither the hospitals nor clinics communicated to the groups of voluntary caregivers that a patient was in need of home care. Evidence from elsewhere in Zimbabwe shows that home-based care can be highly effective if the programme is part of the public healthcare sector (UNAIDS, 1999). However, even a working collaboration between hospitals, clinics, and care groups could still miss the poorest households, which are unable to seek medical help from the public healthcare system and consequently do not get referred to a home-based care group. The following quote from an interview repeats what I heard in many conversations: ‘In the homes there are plenty of people suffering from AIDS who fail to visit hospitals and clinics because of the lack of money. When we go to the clinic or the hospital we need money; if we do not have money, then we will not be treated. Therefore, many people who have AIDS do not even go to hospitals.’ In 2009, the situation had significantly improved due to the coordination of the voluntary caregivers at the clinic level. The clinic’s health workers regularly discussed with the volunteers which patients needed support at home. Since ARVs are provided for free at municipal clinics in Zimbabwe, even members of low-income households in the township had access to treatment and care at a clinic. Additionally, as increasing numbers of people living with HIV use ARVs, the number of bedridden individuals at home in need of home visits by volunteers is reduced. Voluntary caregivers’ burnout Burnout of volunteers is a challenge, despite the positive changes discussed above. The voluntary caregivers appeared exhausted by their case loads, hence increasing numbers are choosing to leave the support programmes. Consequently, more home visits are being done by fewer individuals. IRIN (2007) reported that some Zimbabwean programmes have introduced incentives to guarantee the retention of volunteers. One reason for burnout lies in the nature of caring for terminally ill patients and their families: being constantly exposed to suffering and loss can lead to burnout if no support is offered to the home caregiver (Defilippi, 2003b). However, my interviews in 2009 indicated that the provision of free ARV treatment has significantly reduced this source of burnout; the volunteers frequently commented on how fulfilling and encouraging it was to see their clients’ health improve due to the drugs. In addition, the coordination of volunteering activities at the clinic level provides a platform for volunteers to discuss their experiences with peers and to receive guidance from clinic personnel. Nevertheless, some of the volunteers interviewed still felt exhausted. When burnout occurs, people become

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pessimistic and lose their capacity to give compassionate care. I observed this with some voluntary caregivers, but it can also affect administrators of caregiver programmes. For instance, I spoke with the director of one home-based care programme who, inundated by requests for voluntary caregivers and overwhelmed by the suffering of clients, spoke harshly about people with AIDS and blamed them for having contracted HIV infection through immoral or reckless behaviour. An additional problem, observed by me particularly during 2003, was that the country faced shortages of even the most basic commodities. The majority of volunteers were women, who were also expected to spend time waiting in long lines for basic necessities; thus, they were torn between responsibility for their own families and responsibility for the households they visited. Even though during research in 2009 the stores were well stocked, prices had skyrocketed and most households faced great difficulty in paying their bills. Caregivers have become preoccupied with their own economic concerns, giving less attention to their volunteer work, a problem that has been reported elsewhere in Zimbabwe (IRIN, 2007). Voluntary caregivers’ motivations What motivates voluntary caregivers to participate in and to remain committed to providing home-based care? The fact that most of the volunteers are women is generally explained through their socialisation into caregiving roles (Tlou, 2002). Besides this important observation, little is known about the factors that keep volunteers committed to these programmes, yet such knowledge is important for developing this valuable resource to its potential (Mahilall, 2006). Most of the volunteers I met were members of various Christian denominations who were encouraged and supported by their churches. Religious values, such as the responsibility to care for those who are poor, ill or weak were important for them; additionally, they shared an understanding that to bring hope and comfort to patients and their families is a Christian duty. These values and concerns were reinforced by their respective denominations and church associations. Religion also provided them with inner strength when they faced human suffering. It has been observed that religion is an important source of strength and comfort for family caregivers (see MacNeil, 1996) and it serves the same function for voluntary caregivers. During my interviews with township residents, it emerged that churches and voluntary caregivers who are encouraged by their churches to volunteer are greatly appreciated in the community, as the following representative quote shows: ‘Churches provide psychological healing, give encouragement to the sick not to lose hope and not to die before their time. Within churches there are dedicated home-based caregivers who attend to the sick.’ Such appreciation for the work of churches from the local community strengthened the commitment of some of the volunteers. However, caregivers in general were appreciated and held in high esteem, irrespective of their religious affiliation. Caregivers earned respect and prestige for their volunteering; in other words, caregivers exchange time and energy for social

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capital (Bourdieu, 1986). These benefits contributed to keeping them motivated and committed. Another factor, crucial for understanding why individuals commit themselves to voluntary caregiving, is that many volunteers had firsthand experience of caring for someone with AIDS illness. Caring for a terminally ill patient at home and being supported by others translated into empathy and compassion for those in similar circumstances, as has been documented in Zambia by Edoh (2004). The fact that some volunteers may also be HIV-positive has to be considered when we try to understand the motivations for caregiving. In at least one care group, the majority of the volunteers I interviewed were themselves HIV-positive. These volunteers were cognizant and fearful about what would happen to them and their children if they developed clinical AIDS. Several told me that they hoped the concern they had shown for others would be shown to them. An additional reason for volunteering, more common among volunteers who were not active in a church, was a hope to get closer to local politicians through their volunteering activities. At times, the caregivers needed to discuss issues of common concern with the ward’s leadership. They might also meet influential individuals during their home visits and they represented their caregiver groups at official events. At least some of the volunteers stated that they are committed to caregiving in anticipation of later benefits. They were aware of the importance of developing a wider social network that included resource gatekeepers and influential decision-makers in the volatile and unpredictable Zimbabwean economy. The volunteers with whom I spoke were by and large from low-income socio-economic groups, and mostly from households without any formally employed individual. Thus, the small remunerations typically given to voluntary caregivers contributed to the wellbeing of their families. Other studies have made a similar finding (e.g. Uys, 2003). Many of the volunteers with whom I spoke anticipated that their activities would lead to full-time employment, perhaps as a caregiver in a hospice for AIDS patients, in a clinic, or in another programme funded by the government or an NGO. Some of those interviewed believed that they had to be patient because sometime in the future their full-time volunteering would become a paid position. Such thinking is reasonable, considering the high unemployment rate in Zimbabwe, which is estimated at 94% (IRIN, 2009), encouraging individuals to hold on to any activity that could lead to some sort of regular income. This reasoning (i.e. that volunteering could lead to material benefits) became an issue of concern when some of the care groups began to address child malnourishment, particularly when one or both parents were deceased. So-called supplementary feeding schemes were developed by some of the caregiver groups. At times, parents were given corn flour to provide sufficient nutrition for their children, but generally the caregivers prepared meals at a central location to ensure that the children were benefitting. Some voluntary caregivers also prepared food provided by NGOs for primary school pupils; those who prepared the meals also ate and took leftovers home. Rumours circulated

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that the caregivers deliberately cooked too much food in order to bring food home to their own households, and some caregivers were accused of theft, though this accusation might have been motivated by envy and the knowledge that the volunteers also suffered because of food shortages. The volunteers generally ignored such rumours, but they did admit to the temptation to steal from the supplies when they were unable to prepare meals for their own households. Similarly, they were often unable to buy soap for their families while otherwise providing AIDS patients with it. I do not mean to suggest that gaining material benefits is a primary motivation for voluntary caregiving. Many volunteers in the study did not expect material benefits, but they expressed a desire for some recognition for their efforts. Even small gestures of recognition could be sufficient to strengthen their motivation to continue volunteering. The following example illustrates this point. I attended a special meeting of caregivers in 2009 as they planned a memorial service for deceased members of the group. Each member was asked to contribute a certain amount for a meal during the event. From what volunteers told me during interviews, I concluded that some gesture of recognition from the community during the memorial service would have boosted their commitment — for example, if the City Council or an NGO had paid for the meal, or if representatives of the clinic, the municipality, or the churches had been present to show their appreciation. Volunteers’ motives to continue supporting family home-based caregivers appear to be varied. They range from religious values to empathy based on having experienced the suffering caused by a case of AIDS illness in their own household; to hope for securing medical support in the future, gaining prestige, or enlarging their social network so as to receive some material benefits in the future. Conclusions The research focused on voluntary caregivers without whom most home-based programmes in Zimbabwe would be unable to provide adequate care for people living with AIDS. Generally, the voluntary caregivers in Ward 20 in Bulawayo found it difficult to support individuals living with AIDS and their families due to lack of funding for meaningful care, case overloads, and the stigma of HIV and AIDS. The portion of the research done in 2009 indicated that some concerns and issues facing past voluntary caregiver groups had been addressed, however: voluntary caregiving is now coordinated with the public healthcare system at the clinic level. Nevertheless, a stronger integration of the volunteers into the healthcare system is needed to develop this valuable resource to its potential. For example, closer cooperation between volunteers who make home visits and clinic personnel regarding the content of the home-care kits and the administration of particular drugs and treatments, such as painkillers, would make caregiving more effective. Several volunteers related that proper use of such items could be assured and potential abuse prevented by using the patients’ records to obtain medication and treatments from the clinic. Much of what I observed in Bulawayo, particularly in Ward 20 of Nkulumane, has been similarly documented elsewhere

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in southern Africa. However, some voluntary caregiving issues appear to be unique to Zimbabwe. The problematic political situation and the need to develop links with people who are politically and economically more powerful in the country strengthened the motivation of some to volunteer, as they sought avenues for engaging with the local political leadership. The difficult economic situation in the country was also responsible for motivating some of the volunteers, many of whom hoped for eventual material benefit. However, most of the volunteers with whom I spoke highlighted other reasons, including empathy, religious values and social prestige. Thus, the motivations for voluntary caregiving are complex: the research demonstrates that a combination of social, religious, economic, and political concerns can drive volunteers to provide home-based care for AIDS patients. Presenters at a UNAIDS conference held a decade ago pointed out that synergy between community members, government agencies, and NGOs is key in carrying out effective home-based care for people living with HIV (UNAIDS, 1999). More extensive collaboration between government, non-profit organisations, and churches is needed to strengthen the commitment and motivation of volunteers in order for voluntary caregiving to reach its potential. In Zimbabwe, for instance: • The government, through its clinic and hospital personnel, could further integrate volunteers into the national healthcare system. • City, ward and church officials could express gratitude to volunteers during public functions, a relatively low-cost and high-benefit way to recognise caregivers within their own communities. • Non-profit organisations and clinics could consult with volunteers to identify and address the needs of volunteers and their clients. Together, they could identify which care items and food supplies volunteers find most useful (rather than providing goods that caregivers neither want nor need). • Churches could better encourage their members to care for the sick and to publicly acknowledge those who do so. Because the motivations and concerns of voluntary caregivers are complex, effective development of volunteer home-based-care programmes requires the commitment of several different stakeholders, including healthcare administrators, clinic management and personnel, local community leaders, NGOs and church groups. Some of the needs of caregivers are relatively simple and cost-effective to address, such as a desire for community recognition and greater organisational integration with local clinics. Only by understanding what motivates those who provide care for AIDS patients at home can their needs be addressed and their commitment and effectiveness be improved. Notes 1

This is a rough indicator of the number of interviews. I cannot provide exact numbers for the individual interviews and focus group discussions mainly because unexpected events (such as visitors arriving or children playing in the room where the interview was held) sometimes caused me to stop a formal

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2

3

4

5

6

interview, to interrupt it for a prolonged time, or to switch to taping a casual conversation. Also, during the course of some interviews, others entered to just listen, or opted to join in, while others sometimes had to leave. At times, what began as an interview with an individual turned into a focus group discussion, and vice versa. This calculation ignores the fact that some residences contained more than two households. However, such cases were fewer and generally consisted of smaller households. War veterans include not only participants in the war leading to independence in 1980, but also those who currently associate themselves with the pro-Mugabe War Veterans Association in support of ZANU PF. The text of the song was translated by Eddie Dzinda Ngoma from the original Ndebele: ‘Haye, thuma thina noma kunzima ezigulaneni. Kasizikhethi. Ngicela iTelephone ngitshayele iHomeBased-Care. Akulula kunzima nxa ugulelwa, Bomama, Bobaba.’ The Ndebele expression for this term is balomoya ongalunganga, which has a wide range of meanings: from being possessed by a troublesome spirit, to being antisocial. The interviewee meant that some family caregivers did not show an appropriate level of love and concern for their sick relatives; instead, those caregivers were embarrassed by their sick relatives or by their behaviour associated with having contracted HIV infection (e.g. premarital or extramarital sex). During 2009, various NGOs provided monthly food supplies to people receiving TB or ARV treatment; however, this support was discontinued after about six to eight months, which caused great distress, as the difficult economic situation in Zimbabwe made it difficult for individuals to find employment and to provide basic necessities for themselves and their families.

Acknowledgements — I owe special thanks to the voluntary home-based caregivers in Bulawayo, whose dedication and commitment to alleviating the suffering of their AIDS-affected neighbours and their families was an inspiration to me. Their cooperation made possible the research presented here. I am grateful to my research assistants Bernadette Maphosa, Eddie Dzinda Ngoma and Reuben Alvan Ngwenya. The research was funded by grants received from the Department of Anthropology at the University of Florida (USA), the Society of the Divine Word (USA), and the National Science Foundation (USA) (dissertation research award number 0228412). Thanks are also due to the Department of Sociology at the University of Zimbabwe, Harare, for facilitating the necessary paperwork for conducting fieldwork (permit number 02290) and granting me an appointment as a research associate. I am grateful to the City of Bulawayo, particularly the city council’s health services department, which gave me permission to carry out research there (reference number STN.TD.N6A/103). Thanks also to Judy Johnstone and Erica Hill who edited drafts of this paper. The author — Alexander Rödlach is an assistant professor at Creighton University and a medical anthropologist focusing on social and cultural explanations of HIV and AIDS. He is currently studying the cultural meanings of HIV/AIDS and TB in Zimbabwe and how these influence the reception of integrated medical services for both diseases. In addition, he has investigated the stressors faced by refugees from the Sudan who have settled in Omaha, Nebraska, and how they cope with stress.

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