JAN ORIGINAL RESEARCH
Defying all odds: coping with the challenges of volunteer caregiving for
patients with AIDS in South Africa
Olagoke Akintola
Accepted for publication 4 April 2008
Correspondence to O. Akintola:
e-mail: akintolao@ukzn.ac.za
Olagoke Akintola PhD MPH
Senior Lecturer
School of Psychology, University of
KwaZuluNatal, Glenwood, Durban,
Kwazulu-Natal, South Africa
 2008 The Author. Journal compilation  2008 Blackwell Publishing Ltd
AKINTOLA O. (2008) Defying all odds: coping with the challenges of volunteer
caregiving for patients with AIDS in South Africa. Journal of Advanced Nursing
63(4), 357–365
doi: 10.1111/j.1365-2648.2008.04704.x
Abstract
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 chal-
lenges 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.
Keywords: caregiving, coping strategies, HIV/AIDS, home-based care, stress,
stressor, volunteer caregivers
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O. Akintola
Introduction
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 3Æ2% 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
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
358
(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 propor-
tion (46Æ2%) 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 coun-
tries 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 organi-
zations 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
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JAN: ORIGINAL RESEARCH
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
Aim
The aim of the study was to explore the challenges experi-
enced by volunteer caregivers of PLWHAs and the strategies
employed in coping with these challenges.
The main questions addressed were: What are the chal-
lenges 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
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Challenges of volunteer caregiving for patients with AIDS
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. Volun-
teers 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 vari-
ables, the nature and meanings of caring, challenges of caring
and how volunteers interpret and make sense of these chal-
lenges as well as coping strategies employed. All the inter-
views 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 com-
munities, 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.
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O. Akintola
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 circum-
stances. 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 obser-
vations, 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
Almost all of the participants (n ¼ 20) were women (n ¼ 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 confront-
ing them. This theme captures the essence of the different
kinds of odds staked against volunteers in the course of caring
360  2008 The Author. Journal compilation  2008 Blackwell Publishing Ltd
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 adjust-
ments 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.
JAN: ORIGINAL RESEARCH
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, emo-
tionally 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.
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Challenges of volunteer caregiving for patients with AIDS
Struggling to maintain confidentiality
Patients trusted their volunteers and therefore shared confi-
dential 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 con-
fidentiality, 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 behavio-
ural 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.
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O. Akintola
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
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
362
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
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JAN: ORIGINAL RESEARCH
What is already known about this topic
• 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 phys-
ical, emotional and socio-economic burdens.
• Family caregivers are affected by similar kinds of
stigma to their patients.
What this paper adds
• Stigma and discrimination are stressors affecting vol-
unteers 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 volun-
teers 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 vol-
unteers’ health and wellbeing.
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 reduc-
ing stigma and discrimination of PLWHAs in households
and communities.
Family caregivers and patients tended to use more ineffec-
tive emotion-focused coping strategies, such as denial, con-
cealment, anger and impatience, which constituted stressors
for volunteers. Volunteers initially appraised patients’ condi-
tion 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 expe-
rience 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
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Challenges of volunteer caregiving for patients with AIDS
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 admini-
stration 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.
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O. Akintola
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
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
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, Coun-
cillor 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
364  2008 The Author. Journal compilation  2008 Blackwell Publishing Ltd
fellowship grant from the Research Office, University of
KwaZuluNatal, Durban, South Africa.
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