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Keywords:

  • caregiving;
  • coping strategies;
  • HIV/AIDS;
  • home-based care;
  • stress;
  • stressor;
  • volunteer caregivers

Abstract

  1. Top of page
  2. Abstract
  3. What is already known about this topic
  4. What this paper adds
  5. Introduction
  6. Background
  7. The study
  8. Findings
  9. Discussion
  10. Conclusion
  11. Acknowledgements
  12. References

Title. Defying all odds: coping with the challenges of volunteer caregiving for patients with AIDS in South Africa.

Aim.  This paper is a report of a study to explore the challenges experienced by volunteer caregivers of people living with HIV/AIDS and the strategies employed in coping with these challenges.

Background.  Informal caregiving is associated with stresses that often results in poor health outcomes for caregivers. In South Africa, volunteers play a major role in the provision of care for people living with HIV/AIDS and have been shown to experience burdens as a result of caring. However, little is known about stress and coping among volunteer caregivers.

Methods.  An ethnographic study was conducted, using observation and in-depth interviews, to collect data with 20 volunteers and other stakeholders in two semi-rural communities in South Africa over a 19-month period in 2002/2003.

Findings.  ‘Defying all odds’ emerged as the central theme that encompassed the various ways in which volunteer caregivers dealt with the many practical challenges confronting them. These challenges initially posed a threat to volunteering work but were gradually appraised by volunteers as challenges that could be dealt with using various strategies in order to continue providing care. Eight themes highlighting these challenges and the coping strategies employed by volunteers were identified.

Conclusion.  A clear understanding of how volunteers deal with challenges of caring for people living with HIV/AIDS can give insight into their weaknesses and strengths and can inform the design of interventions aimed at providing support. Studies are needed to facilitate better understanding of the processes of appraisal of challenges by volunteers and the effectiveness of coping strategies, and to track coping strategies over time.


What is already known about this topic

  1. Top of page
  2. Abstract
  3. What is already known about this topic
  4. What this paper adds
  5. Introduction
  6. Background
  7. The study
  8. Findings
  9. Discussion
  10. Conclusion
  11. Acknowledgements
  12. References
  • • 
    Volunteers constitute a substantial proportion of caregivers and play a major role in home care for people living with AIDS.
  • • 
    Volunteer caregivers in South Africa experience physical, emotional and socio-economic burdens.
  • • 
    Family caregivers are affected by similar kinds of stigma to their patients.

What this paper adds

  1. Top of page
  2. Abstract
  3. What is already known about this topic
  4. What this paper adds
  5. Introduction
  6. Background
  7. The study
  8. Findings
  9. Discussion
  10. Conclusion
  11. Acknowledgements
  12. References
  • • 
    Stigma and discrimination are stressors affecting volunteers in uniquely different ways from patients and family caregivers and can have negative implications for patients’ experiences of illness, dying and death.
  • • 
    Demands arising from the home-based care context, deficiencies in nursing and coping skills among volunteers and a lack of support from medical personnel create stress and make coping difficult for volunteers.
  • • 
    Volunteers employ a variety of coping strategies, which are mainly aimed at helping them to meet the needs of patients but which may be insidious to volunteers’ health and wellbeing.

Introduction

  1. Top of page
  2. Abstract
  3. What is already known about this topic
  4. What this paper adds
  5. Introduction
  6. Background
  7. The study
  8. Findings
  9. Discussion
  10. Conclusion
  11. Acknowledgements
  12. References

Informal caregivers play a major role in providing home care for people living with HIV/AIDS (PLWHAs) the world over. Informal caregivers are people who provide care outside the formal healthcare setting and are not employed or receiving remuneration for their services (LeBlanc et al. 1997, London et al. 2001; Akintola 2006). They comprise family members who provide care for siblings, parents, spouses and other family members with HIV/AIDS (LeBlanc et al. 1997, London et al. 2001), and are also referred to as family caregivers (Akintola 2006). In the United States of America (USA), for example, a population-based study has revealed that 3·2% of the adult population provide care for a friend, spouse, relative or lover with AIDS (Turner et al. 1994).

However, comparative estimates are not available for African countries, where there has been an increasing reliance on volunteer caregivers for the provision of informal care to PLWHAs. Volunteer caregivers are not usually members of the patient’s family, but are people recruited from AIDS-affected communities by AIDS care organizations. They are trained to assist family members in providing care for the PLWHAs, but do not receive any remuneration (Blinkhoff et al. 2001, Steinitz 2003, Akintola 2006).

In South Africa, research focusing on volunteer caregivers is sparse and available studies (Marincowitz et al. 2004, Akintola 2006) give little information about stress and coping among volunteers. In the study reported in this paper, the challenges of volunteer caregiving for PLWHAs and how volunteers cope with these challenges are explored. The purpose is to provide empirical data that can be used to improve support for volunteer caregivers, thereby improving health and socio-economic outcomes for volunteers, family caregivers and their patients.

Background

  1. Top of page
  2. Abstract
  3. What is already known about this topic
  4. What this paper adds
  5. Introduction
  6. Background
  7. The study
  8. Findings
  9. Discussion
  10. Conclusion
  11. Acknowledgements
  12. References

Informal caregiving has been associated with negative health outcomes worldwide (Turner et al. 1994, Turner & Catania 1997, Flaskerud & Lee 2001, Akintola 2006, Kipp et al. 2006, Orner 2006). For example, in a study of family caregivers in Brazil it was found that caregivers experience emotional difficulties such as fear of infection, revulsion, pity, grief and guilt from being helpless in the face of death (De Figueiredo & Turato 2001). Another study in South Africa showed that caregiving had a negative impact on the physical and mental health of family caregivers (Orner 2006). In addition, caregivers may also be at elevated risk of infection with HIV/AIDS and tuberculosis (Lindsey et al. 2003, Akintola 2006). Adverse socio-economic consequences (Nnko et al. 2000, Akintola 2004a, Orner 2006), stigma and discrimination, isolation and lack of support have also been documented among family caregivers in Ghana, Tanzania, South Africa and the Democratic Republic of Congo (Nnko et al. 2000, Mwinituo 2006, Nkosi et al. 2006, Orner 2006). Further, studies in Southern Africa have shown that caregiving can create major time burdens for caregivers, exacerbating poverty among previously poor caregivers (Hansen et al. 1998, Lindsey et al. 2003, Akintola 2004a).

In South Africa, PLWHAs constitute a substantial proportion (46·2%) of those seeking medical care in public health facilities (Shisana et al. 2002) and this, combined with the rising HIV/AIDS infection and deaths among nurses and other healthcare workers, has put an unprecedented strain on public health services (Aitken & Kemp 2003). In addition, poor remuneration of healthcare personnel and poor working conditions has led to large-scale emigration to foreign countries among professional nurses (Aitken & Kemp 2003). Currently, there is a critical shortage of nurses and other medical personnel in the country (Aitken & Kemp 2003). To deal with these capacity problems in the public healthcare system, the government has adopted home-based care as an alternative to hospital care. As a result public hospitals send PLWHAs home to be cared for by family members.

However, many HIV/AIDS-affected families are poor and do not have the requisite skills, financial and material resources to provide home care and therefore find caring overwhelming. Home-based care programmes have therefore been set up across the country to assist families in caring for the ill people. However, these care programmes receive very limited support from the government (Steinberg et al. 2002) and this, combined with the reluctance of donor agencies to fund caregiver salaries (Akintola 2004b), leaves care organizations with little option but to rely mainly on volunteers to provide care (UNAIDS 2000; Akintola 2004b). Volunteers constitute a substantial proportion of caregivers of PLWHAs in the country. In a recent national study it was found that 50% of HIV/AIDS-affected households made use of volunteers (Steinberg et al. 2002). Although a few studies in South Africa have documented the burden associated with volunteering (UNAIDS 2000; Marincowitz et al. 2004, Akintola 2006), we still know very little about the stress and coping process among volunteers; no literature was found on this topic.

The stress and coping paradigm described by Lazarus and Folkman (1984) offers insight into how people react when under stress. Coping strategies refer to a person’s behavioural and psychological efforts to manage stressful events (Lazarus & Folkman 1984). Coping could be problem-focused, referring to efforts to do something active to alleviate stressful circumstances, or emotion-focused, which refer to efforts to regulate the emotional consequences of stressful or potentially stressful life events. In coping with stressful events, individuals carry out cognitive appraisal of the event: a process of evaluation that reflects the individual’s subjective interpretation of the event (Lazarus & Folkman 1984). Individuals carry out primary appraisal to evaluate whether the stressful event is potentially beneficial or harmful, and secondary appraisal to evaluate what, if anything, can be done to prevent harm or improve the prospects for benefit (Folkman et al. 1986). Both processes - cognitive appraisal and coping - mediate between stressful events and well-being. Studies among informal caregivers have shown that the adoption of appropriate coping strategies could lead to lower burden and more positive health outcomes (Pakenham et al. 1995, Pakenham 2001). For instance, Pakenham (2001) found that the use of problem-focused coping strategies was associated with lower levels of psychological distress. This paradigm is useful for exploring stress and coping among volunteer caregivers.

The study

  1. Top of page
  2. Abstract
  3. What is already known about this topic
  4. What this paper adds
  5. Introduction
  6. Background
  7. The study
  8. Findings
  9. Discussion
  10. Conclusion
  11. Acknowledgements
  12. References

Aim

The aim of the study was to explore the challenges experienced by volunteer caregivers of PLWHAs and the strategies employed in coping with these challenges.

The main questions addressed were: What are the challenges relating to caring that confronts volunteers? How do volunteers interpret and make sense of these challenges? How do these challenges impact on their lives and work? How do volunteers cope with these challenges?

Design

This was an ethnographic study: the study of the culture (shared system of meanings) of a group of people (Boyle 1994, Schensul et al. 1999, Henning et al. 2005). Ethnography was chosen because it is most suited to capturing the everyday realities of volunteers and for observing and documenting volunteer caregiving activities (Axinn et al. 1991, Rossman & Rallis 1998). Data were collected in 2002/2003, during which period the author and interviewers participated in daily briefing sessions, home visits, meetings, assisting with logistics, record-keeping, and other routine activities of the volunteers.

Participants

The study was carried out in two semi-rural communities located on the outskirts of Durban, South Africa. The participants were volunteer caregivers working with a non-governmental organization (NGO) that offers home-based care services to these communities. They were recruited as part of a larger study investigating the impact of caregiving on caregivers of PLWHAs. Interviews were also conducted with key informants such as home-based care managers, coordinators of volunteer caregivers and community clinic staff. A meeting of volunteer caregivers was convened - with assistance from the manager of the NGO and local councilors - where the purpose of the study was discussed and those who consented to participate in the study were recruited. Volunteers were included in the study if: they were enrolled and trained as caregivers with the NGO; were providing care to someone with clinical AIDS; had been caring for at least three months; and were willing to respond to questions about their experiences. Twenty-one volunteers were approached but only 20 agreed to take part in the study, and all responded freely to all questions.

Data collection

Interviews

The interviews took place in offices provided by the local councillor, community resource center or participants’ homes, depending on participants’ preferences and logistics. Interview schedules consisting of topic guides and open-ended questions were used to conduct in-depth interviews with participants. The interview schedules were developed using information from an extensive review of the literature on informal caregiving for PLWHAs and informal discussions with stakeholders. They focused on socio-demographic variables, the nature and meanings of caring, challenges of caring and how volunteers interpret and make sense of these challenges as well as coping strategies employed. All the interviews were conducted by two trained interviewers, who were also volunteers from the community, and took between 40 and 90 minutes each. All interviews with volunteers were conducted in Zulu, the local language spoken in the communities, while interviews with stakeholders were conducted in English. All interviews were tape-recorded, transcribed and those conducted in Zulu were translated into English.

Observation

The researcher and interviewers also accompanied volunteers on their rounds while visiting patients’ homes to observe and document caregiving experiences. Field notes were used to document these observations. Invaluable data obtained from observation were used primarily to illuminate data collected from interviews and give a better understanding of stress and coping among volunteers.

Ethical considerations

The study was approved by a university ethics committee. In addition, permission was obtained from the local NGO providing AIDS care services to the communities. Participants gave oral informed consent before interviews were conducted. Finally, permission was obtained from each participant before the interviews were audio-recorded. Because of the sensitive nature of issues under investigation, participants were given the opportunity to choose an interview venue with which they felt comfortable and safe. Arrangements were also made to refer volunteers to resident counsellors in the care programme should the need arise. However, none of the participants required counselling as a consequence of the study.

Data analysis

Data analysis was carried out concurrently with data collection: a cross-section of interviews were transcribed and translated daily, and the findings were used to improve on questions for interviews conducted the next day (Schensul et al. 1999). Thematic analysis was chosen to analyse the ethnographic data because of its usefulness in exploring context and meaning (Ulin et al. 2002: 143) related to volunteers’ experiences of coping with stressful circumstances. Analysis was guided by the literature on stress and coping among informal caregivers (Lazarus & Folkman 1984, Pakenham et al. 1995, McCausland & Pakenham 2003). Analysis began with immersion in the data to make sense of it. Thereafter, information from participant observations, which were recorded in field notes, were used to triangulate data collected through volunteer and stakeholder interviews in order to illuminate the data and also to guide the coding process. Emerging themes were identified and coded, and texts representing each theme were further explored to identify sub-themes (Ulin et al. 2002).

Findings

  1. Top of page
  2. Abstract
  3. What is already known about this topic
  4. What this paper adds
  5. Introduction
  6. Background
  7. The study
  8. Findings
  9. Discussion
  10. Conclusion
  11. Acknowledgements
  12. References

Almost all of the participants (n = 20) were women (n = 19) and their ages ranged from 27 to 55 years. Most had between 7–12 years of education, but two had university education. Only four of the 20 participants were employed, one was a domestic worker and the remaining three were self-employed, mainly as hairdressers and traders. Only three were married, one was divorced and the remaining 16 were unmarried.

‘Defying all odds’ to provide care emerged as the overall theme in the way volunteers coped with challenges confronting them. This theme captures the essence of the different kinds of odds staked against volunteers in the course of caring and how they persevere and devise various strategies to cope with these challenges and continue with their work. These experiences span various times and phases while engaging with patients. Several themes emerged.

Dealing with denial, stigma and discrimination

Volunteers experienced denial and stigmatization of potential patients by their families. Families denied volunteers access to their homes fearing that their presence would make it easy for community members to identify and stigmatize them. Some would deny that they had an ill person in the house, while others insulted volunteers, suggesting that the care provided was of little or no value:

The sad thing is that sometimes the families do not welcome us nicely, but the sick person wants us to help him/her. The family members will say, ‘You are playing with the ill person’ because they cannot do anything for themselves. Others would say, ‘You’ve come to check if s/he is still alive’.

Volunteers also found discrimination against patients by family members stressful. One indicated that ‘some families lock patients up in separate rooms and push meals to them through the door like dogs’. They would also not share crockery with them. Another volunteer explained:

Our patients tell us that they suffer a lot when we are not around with them because the family members do not look after them. It was so bad that one of my patients asked me if I could arrange for him to get a place like a hospital to go and stay because they were not treating him well and there was discrimination in the house.

Some families were reported to have taken severe physical restrictions in the past to prevent the PLWHA from leaving the home. Discrimination against patients was an on-going problem and a constant stressor for volunteers. They coped by educating families about HIV/AIDS and the value of home care, and have since seen a considerable improvement in the attitude of AIDS-affected families.

Waking up to reality

The physical condition of patients was yet another stressor for volunteers. They had to come to terms with the reality of caring for bedridden patients who were in pitiable condition. Volunteers appraised the situation and in time made adjustments that enabled them to cope. Some, however, requested to be reassigned to patients with less serious symptoms:

In the beginning it affected me a lot, though I didn’t show it to the patient. I was crying profusely but still helped him in dressing up.

Initially I was scared because sometimes I feel like crying. I saw that if I keep on crying I will be worrying myself; then I started learning to give the sick person love.

Becoming a competent caregiver

Patients had special care needs which might repulse caregivers and they doubted whether the volunteers were providing care willingly and ‘from their hearts’. This was a source of stress for volunteers, but made them learn fast on the job by paying attention to the objective and subjective needs of patients in order to become competent. Competence helped them cope with the behaviour of patients and meet their care needs:

Every time if you are talking to a sick person (AIDS patient) you must look at his face, because sometimes he feels that you are not doing it (caring) from your heart that may be you are forced to do it. You must first give him love and embrace him, because those people feel that nobody loves them anymore.

If you are doing this home-based care job you have to be brave, must have hope and volunteer with love. And you must always carry the needs of the patients because sometimes the patients dirty (defaecate on) themselves.

Pushing ahead with caring work

Volunteers soon found that their competence was not good enough to significantly alleviate the pain and suffering of the patients. Their training in basic nursing care had limited effects, and they had to watch many of their patients die without being able to administer any pain-relieving or life-saving medication. One lamented: ‘The main problem was this continuous running stomach; I tried to help using my (care) kit, but was finding it difficult to make a difference with the little I could do’. Another said, ‘He exhausted the 10 disposable nappies in no time and his eyes were turning white. We called the ambulance… the paramedics knew he won’t make it though he was still warm… the second day I heard he was dead.

As a consequence, volunteers became discouraged, emotionally drained and found it difficult to continue with their work to the extent that some considered quitting. They used a variety of coping strategies: keeping their minds off the situation and focusing on other things; talking to their colleagues or a religious professional about it; and going to church to pray and sing in an attempt to forget their problems. Volunteers had little time to deal with their problems. They also did not have any professional help, and had little choice but to push ahead with their work because of the large number of patients who needed care.

Struggling to maintain confidentiality

Patients trusted their volunteers and therefore shared confidential information with them, including disclosing their HIV status. While volunteers did not have problems keeping secrets or confidential information, it was stressful for them to maintain confidentiality about patients’ HIV status:

If a person discloses to you…. and you ask them if they want to tell the relatives, they say, ‘No’. And if you keep on pestering them, they do not want you anymore.

This put volunteers in a difficult situation, as they were usually seen by families as betraying their trust:

I saw that his sister in-law was devastated and angry (with both patient and volunteer) because this man died and the family did not know what was wrong with him. His sister in-law was very sad because the results of the tests … were not out then. When the paper (results) came back from the hospital, nobody knew what was written on it. The patient did not want the sister in-law to know what was written on the paper. I also did not know what to say ... or do. He (the patient) was the only one who saw it and did not tell anybody the results before he died.

Although volunteers repeatedly assured patients about confidentiality, they still insisted on looking at their files to be sure that their HIV status was not recorded, fearing that the files might fall into wrong hands. Volunteers therefore had to use ‘private signs to indicate when someone is HIV-positive which no one else can understand’.

Managing attitudes and behaviours

Volunteers also deal with patients’ emotional and behavioural issues, such as moodiness and anger:

Sometimes we go to a house (to give care) and a person (patient or family member) becomes rude to us and we have to calm them down. And also we teach the family caregivers that they have to love and look after the sick person because s/he belongs to their family whether or not s/he is rude.

In addition, patients and their families made unreasonable demands of volunteers. One volunteer explained:

If you don’t come for one day, they threaten to report you at your work place… although you tell them that you only volunteer in your spare time, they still do not understand. You come in the morning, give them a bath and do every work in the house... and leave late in the afternoon, but they still don’t appreciate it. They take it as if we are doing a paid job and that it is compulsory for us to come everyday.

Another volunteer, who could not visit one of her patients due to other work commitments, said:

Most of them (the patients) are emotional. Some of them lose their minds and say all sorts of things. Most of them expect you to come with something. They will ask questions like, ‘What did you bring for me?’ - things that you can’t afford. Some will say, ‘Can you buy me Kentucky Fried Chicken’?

Volunteers coped by attributing patients’ behaviours to the terminal nature of their illness and their mental ill-health. They also clarified their roles and educated family caregivers about how to cope with these issues.

Confronting poverty

Volunteers confronted, first-hand, the poverty and needs of the affected families. Poverty was so serious that it was a major issue raised by all the participants. Volunteers’ closeness to patients made them feel obliged to assist those who could not feed themselves or pay children’s school fees.

Caregivers reported the frustrating experience of trying to access for their patients the welfare grants provided by the state. The problems of accessing grants therefore became a stressor for family caregivers, volunteers and the NGO. Through the NGO, volunteers were able to network with social welfare officers/social workers to whom they referred social welfare issues. While many of the volunteers were successful in assisting patients to access grants, there were still scores of patients who were not successful.

Developing a thick skin

The fact that volunteers did not receive any remuneration sometimes drew the ire of their friends and acquaintances, who insulted them. Although they were demotivated, none of them quit as a consequence. Instead, this reaction presented an opportunity for them to reappraise their commitment to volunteering and to become immune to criticism:

My friends always tell me I cannot go and clean people’s faeces or work for nothing [without remuneration], but I told them I am a volunteer - I cannot insist on being paid. Because of love, I still continue.

Discussion

  1. Top of page
  2. Abstract
  3. What is already known about this topic
  4. What this paper adds
  5. Introduction
  6. Background
  7. The study
  8. Findings
  9. Discussion
  10. Conclusion
  11. Acknowledgements
  12. References

The data give insights into stress and coping associated with volunteer AIDS care. However, the study was not without limitations. First, the fact that volunteers were recruited from one NGO affiliated to a healthcare facility means that the experiences of volunteers working in other home-based care organizations or settings were not captured. An exploration of the experiences of volunteers in other settings might offer more insight into volunteers’ coping strategies. Second, only experiences relating to stress and coping among volunteers are explored in this paper. Third, the effectiveness of volunteer caregivers’ coping strategies was not explored.

The study extends knowledge on care-related stressors among AIDS caregivers in general, and also provides new knowledge on stress and coping among volunteer caregivers for PLWHAs in Africa. Consistent with Lazarus and Folkman’s (1984) theory, volunteers carry out both primary and secondary cognitive appraisal of stresses confronting them and gradually develop strategies to cope. In doing this, they appraise stressors first as threats but later as challenges which they could master by employing a mix of problem-focused and emotion-focused coping strategies. This is consistent with Folkman and Lazarus (1985) assertion that people use both forms of coping in almost every stressful encounter.

The findings on disclosure and fear of stigma are consistent with those of previous studies among family caregivers (Nnko et al. 2000; UNAIDS 2000, Lindsey et al. 2003). PLWHAs refrain from disclosing their status to family caregivers for fear of discrimination, but this isolates them from sources of support (Nnko et al. 2000, Akintola 2004a, 2006) and creates stresses that affect the emotional and physical well-being of the family caregivers (Nnko et al. 2000, Lindsey et al. 2003).

This study gives insight into how stigma affects volunteers in the context of home-based care. They experience stigma and discrimination similar to and, at the same time uniquely different from, those experienced by patients and their families. Because volunteers care for stigmatized patients on a daily basis, stigma and related issues constitute stressors in a variety of ways. First, stigma hinders volunteer care work because it makes it difficult to access patients. Second, volunteers have to serve as advocates for stigmatized patients. Third, in keeping their ethical commitment to maintain confidential information, volunteers have to put up with constant stress from family members. Taken together, stigma and discrimination can make the home a hostile place for patients and volunteers, thereby undermining one of the major potential benefits of home care, which is to improve the experience of illness, dying and death (Nsutebu et al. 2001, Uys 2003, Akintola 2006).

Volunteers used mainly active problem-focused coping strategies to address the issue of stigma (Viney & Westbrook 1982, Lazarus & Folkman 1984), and this entailed persisting in educating families. Given that this yielded some positive results, sustained education of affected families can help reduce denial and stigmatization of PLWHAs, thus providing patients with access to much needed care and support by home-care teams. Interventions can also assist family members to help develop better coping skills. Further research is needed to explore issues of disclosure and non-disclosure among home care patients to find culturally- and contextually-congruent ways of reducing stigma and discrimination of PLWHAs in households and communities.

Family caregivers and patients tended to use more ineffective emotion-focused coping strategies, such as denial, concealment, anger and impatience, which constituted stressors for volunteers. Volunteers initially appraised patients’ condition as a threat, which made them scared and cry profusely; however, later they adjusted and re-appraised it as a challenge for which they devised coping strategies. Patients’ attitudes and special care needs led to volunteers employing problem-focused coping strategies: acquiring hands-on experience and becoming competent caregivers. This supports Lazarus and Folkman’s (1984) theory that sees coping as a process, suggesting that coping strategies involved changes as the stressful encounter unfolded. However, the deteriorating condition and frequent death of patients tended to undermine volunteers’ newly-found competence. This made them to feel helpless and therefore they employed mainly emotion-focused coping, such as distancing (keeping the mind off emotional stressors) and seeking social support (Viney & Westbrook 1982, Folkman & Lazarus 1985), to get by in their day-to-day care work.

The emotion-focused coping strategies that volunteers employed may help them continue to attend to the pressing needs of patients. However, this may conceal inadequacies in coping, as stressors may not be dealt with effectively. A preoccupation with catering for the well-being of their patients might lead volunteers to adopt ineffective coping strategies, which might then threaten their health and well-being. This highlights the need for continuing psychosocial support for volunteers. There is a potential role for nurses and other medical professionals in providing support to and educating volunteers. Given the capacity challenges in the healthcare sector, serving and retired nurses could be recruited from the local communities to volunteer in their spare time and provide support for volunteer caregivers. Volunteer nurses could be trained in palliative care to assist in providing close supervision to volunteers and in the administration of medication to PLWHAs. This could serve as a preparatory phase for the introduction of antiretroviral therapy when the resources are available. Nurses could also explore the strategic positioning of volunteers as patients’ trusted confidants to gain insight into the health status and needs of patients.

Given that coping processes mediate between stressful encounters and health outcomes (Folkman et al. 1986), a review of volunteer training curricula to improve content to include coping skills and other areas of deficiencies in knowledge and skills would be helpful. Mental healthcare nurses and psychosocial workers could also assist with giving the psychosocial support necessary for positive coping in the initial stages of volunteers’ work and giving continuing support thereafter. In addition, people in the current support networks of volunteers such as clergy, church members and other volunteers, need to be trained to offer emotional support to volunteers.

Previous studies have suggested the need to integrate dealing with the physical and mental health needs of patients and family caregivers (Flaskerud & Lee 2001). This present study extends knowledge in this area by suggesting that patients’ and family caregivers’ poor physical and mental health status adversely affects the physical and mental health of volunteers, highlighting the need to include the triad in primary health care interventions addressing physical and mental health.

It is disturbing that affected families abused volunteers, thereby creating stress for them. The resilience of volunteers could be explained by a mix of several factors: strong altruistic and humanitarian motivations and the lack of employment in local communities, all of which are beyond the scope of this paper but are explored elsewhere (Akintola 2008). Nonetheless, this behaviour can cause psychological distress for volunteers and is therefore a threat to home-based care and highlights the need for community education.

There is need for counseling and training of volunteers on how to cope with the financial stresses of their patients because of the potential negative effect on their health. In addition, social services staff could work with volunteers to assist in gaining access to grants for patients and could provide social and material support to needy families who do not qualify for state grants.

Conclusion

  1. Top of page
  2. Abstract
  3. What is already known about this topic
  4. What this paper adds
  5. Introduction
  6. Background
  7. The study
  8. Findings
  9. Discussion
  10. Conclusion
  11. Acknowledgements
  12. References

Stress and coping theory sheds light on the stressors creating subjective and objective burdens among volunteer caregivers and how volunteers cope with stressful events, underscoring the need for urgent support from health care and social services. There is need for nurses to work closely with volunteers in a team to provide a continuum of care for PLWHAs. The extent to which volunteers used coping strategies which tended to help them continue with caring work may obscure ineffective coping and could be insidious to caregivers’ health and well-being. A clear understanding of how volunteers cope with care-related stresses can provide insight into their weaknesses and strengths and can inform the design of interventions aimed at providing support. This highlights the need to examine the processes that volunteers go through in adopting coping strategies, and how effective these strategies are in coping with the issues that confront them. There is also a need for studies tracking coping strategies over time to facilitate understanding of what strategies work best and how these are constantly being negotiated as stressful events unfold.

Acknowledgements

  1. Top of page
  2. Abstract
  3. What is already known about this topic
  4. What this paper adds
  5. Introduction
  6. Background
  7. The study
  8. Findings
  9. Discussion
  10. Conclusion
  11. Acknowledgements
  12. References

The author would like to thank the volunteers and other participants who graciously gave of their time to participate in the study. Special thanks to Ms Ronita Mahilall, Councillor Talent Hlongwe, Nomfundo Manqele and the late Derrick Msholozi Xulu for facilitating the field work. The author is also grateful to Professor Inge Petersen for her useful comments on an earlier draft of this paper. The writing of this paper was supported, in part, by a postdoctoral fellowship grant from the Research Office, University of KwaZuluNatal, Durban, South Africa.

References

  1. Top of page
  2. Abstract
  3. What is already known about this topic
  4. What this paper adds
  5. Introduction
  6. Background
  7. The study
  8. Findings
  9. Discussion
  10. Conclusion
  11. Acknowledgements
  12. References
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