Caregivers' Experiences Of Informal
Support In The Context Of HIV/AIDS
The Qualitative Report,
Volume 7, Number 3 September, 2002
Social support is an important
buffer for family caregivers of people living with HIV/AIDS (PLWHIV/AIDS).
With limited formal support options, these caregivers have to rely
increasingly on informal networks. Yet, accessing this avenue is
also fraught with difficulty due to the stigmatising nature of HIV
infection. Research in this area is not just not sparse, but
focusses largely on sources of support and the circumscribing
effects of stigma. To further our understanding, a qualitative study
was conducted using various concepts from social support theory.
Twelve family caregivers in Mumbai,
India, were interviewed,
using the in-depth interview method. An iterative, thematic analysis
was done through which themes and major themes were identified.
Major themes included sources of support, types of support received,
spontaneous support, soliciting support, caregivers' perceptions of
support experiences and reciprocity. The findings raised several
issues for intervention.
Family caregiving, social support, HIV/AIDS
An extensive body of literature
underscores that providing care to an ill family member is a
stressful experience for the entire family (See, for example, Baider,
Cooper, & De-Nour,
1996; Chesler & Parry,
2001; Chilman, Nunally, & Cox,
2002; Hilbert, Walker & Rinehart,
2000; Kuyper & Wester,
1998; Mailick, Golden, & Walther,
1994; Northouse, Dorris, & Charron-Moore,
1995; Radina & Armer,
2001). Within the family, caregivers, who have a greater degree
of involvement in the caregiving process, are subject to more
adverse outcomes. These include experiences of objective and
subjective burden, and detrimental effects on physical and mental
health (Berg-Weger, McGartland Rubio, & Tebb,
2000). While caregiving research has disproportionately focussed
on negative caregiver outcomes (D'Cruz,
forthcoming), it has devoted limited attention to the role of
social support in buffering them (Jankowski, Videka-Sherman, &
1996). Studying this aspect is of significance because social
support has been shown to be positively related to good health. It
is associated with better health outcomes, better coping and less
negative effects of stress (Cohen & Syme,
Explorations of this aspect of
caregiver experiences are particularly relevant in the context of
HIV/AIDS. The progressive, long-drawn and terminal nature of the
infection compound the stress engendered by the caregiving role but
the stigmatising nature of the virus circumscribes caregivers from
seeking and receiving much needed support. Indeed, the limited
research available in the West provides evidence of this. For
example, Jankowski et al. (1996),
in a study of male and female confidants of PLWHIV/AIDS, reported
confidants' networks to be constricted in contact and size.
Confidants had diminished "weak social ties", namely, those with
acquaintances, co-workers and neighbours, and relied primarily on
"strong social ties" with family members and close friends. While
limiting contacts resulted in fewer questions and lower likelihood
of having to divulge the diagnosis, using misrepresentations of the
diagnosis such as maintaining a veil of pretense or a diagnostic
charade, though an important means of coping, made interaction more
stressful and reduced the support available. Confidants reported
that having at least one person with whom they could share the truth
served as a safety valve for their emotional burdens. Yet,
disclosure of diagnosis resulted in outright rejection in several
cases. Moreover, where confidants provided care to PLWHIV/AIDS, the
ensuing time constraints resulted in less social interaction and
hence, less support. In these various circumstances, professionals
played an especially important role in providing support.
Poindexter and Linsk's (1998)
study of older, female, African-American caregivers pointed out that
while respondents experienced reciprocal support from their care
receivers as well as support from spiritual sources, external
support came largely from relatives. Friends were rarely resorted
to, partially due to the experience of discrimination and ostracism
following disclosure of the HIV diagnosis, and partially because
respondents did not wish to disclose their HIV caregiving to persons
outside the family. Though they manifested the need for additional
social interaction and support, respondents felt that they could not
trust anyone to receive the truth and power of their stories. With
their choices for accessing the external support limited, they could
not enjoy the stress buffering effects of social support and were
losing their community at the most trying and painful times of their
Poindexter and Linsk's other (1999)
study of a similar population found that because of the anticipation
of HIV related stigma, caregivers of HIV positive individuals did
not widely disclose the HIV diagnosis, if at all. Consequently, they
neither experienced overt HIV related stigma nor received support
that acknowledged their struggles as HIV affected caregivers. The
study reported that although church participation and spirituality
were important sources of social support for the respondents, they
varied in their disclosure patterns to churches. While eleven of
those who attended church had disclosed to no one in their churches,
two had told only the pastor, and another two had told the pastor
and a few church members. There were two others who had gone public
in their churches, but their disclosures were received with
different responses - one noticed no ramifications, and one was
disappointed that none of the church members provided support.
While the aforementioned studies
provide valuable insights into caregiver experiences of social
support in the context of HIV/AIDS, a closer look at them from the
point of view of social support theory highlights their limited
foci. That is, these studies examined sources of support, and the
circumscribing effects of stigma on support seeking and the
consequent loneliness. But social support is a multidimensional
concept and its study must necessarily touch upon aspects such as
solicited versus spontaneous support, types of support solicited
versus those received, positive versus negative support, actual
versus perceived support, and reciprocity (See, for example, Boyce,
Kay, & Uitti,
1988; Cohen & Syme,
1985; Cooke, Rossmann, McCubbin, & Patterson,
1989; House & Kahn,
1985; Revenson, Schiaffino, Majerovitz, & Gibofsky,
1991; Sherbourne & Stewart,
1991; Unden & Orth-Gomer,
1993). Moreover, in the case of HIV/AIDS, an exploration of the
process of accessing support and its relationship with disclosure is
also relevant. With these objectives in mind, a study of caregiver
experiences with the informal support system in the context of
HIV/AIDS, was undertaken in Mumbai,
The study adopted the qualitative
approach. A phenomenological orientation was incorporated since the
objectives were to explore subjective meanings and experiences from
the respondents' points of view. In-depth interviews were employed
as the method of data collection, and in order to facilitate this
process, an interview guide was developed (See
appendix). Observations made during the course of the interview
Public, private and voluntary
health sector organisations working in the field of HIV/AIDS in the
city of Mumbai,
India, were contacted for the study. The researcher knew about these
organisations either because of her personal contacts with the
organisations themselves or with people who knew them; or because
she had heard about their work from other professionals or the
media. Agreement of these organisations to assist the researcher was
on a voluntary basis. Respondents from these organisations were
chosen through purposive sampling (Morse,
1991). Caregivers with past or present experience of caring for
male and/or female positive people, infected through the sexual
and/or parenteral modes, who had moved beyond the asymptomatic stage
and who had shared their serostatus with the caregiver were included
in the study, regardless of whether the caregiver-care receiver
relationship was based on blood or marital ties or whether the
familial form was traditional or not (See Macklin,
1987, for a discussion on forms of family). Co-residence of the
caregiver and care receiver was not a necessary criterion for
Of the 12 caregivers who
participated in the study, 7 (6 women and 1 man) were seropositive
caregivers and 5 (2 men and 3 women) were negative. Their ages
ranged from 27 to 60 years, and all but 1 caregiver resided with
their care receivers. Six positive caregivers and 4 negative
caregivers cared for one positive person. Of these, 6 looked after a
spouse who had passed away before the study; 2, their sons; 1, a
brother; and 1 was an adopted daughter who was deceased at the time
of data collection. One male positive caregiver had cared for his
positive mother-in-law and positive wife (both of whom had died
prior to the interviews) and was currently caring for his positive
son, while one negative male caregiver was looking after his
positive father and positive brother. Six caregivers belonged to the
lower income group (< Rupees/Rs. 2000 per household per month); 3 to
the lower middle income group (Rs. 2000 per household per month to
Rs. 6000 per household per month); 1 to the middle income group (Rs.
6000 per household per month to Rs.12000 per household per month);
and 2 to the upper income group (above Rs. 12000 per household per
table 1 for details).
Table 1: Socio-demographic profile
In keeping with ethical
considerations in HIV research, the researcher did not approach
potential participants directly. Instead, the staff of the
organisations from where the sample was being drawn identified
respondents who matched the specified criteria and introduced the
idea, and explained the purpose of, the research to them. Only after
they agreed and were comfortable enough, the researcher was
introduced to them. Following rapport building and soliciting their
co-operation, respondents signed a consent form, informing them of
details of the study and their rights as participants. These
included voluntary and informed participation, freedom to withdraw
at any point of time without giving any explanation, and
confidentiality. They decided the location of the interview, as also
the possibility of tape-recording the interviews. Nine respondents
were interviewed in the organisation premises while 3 were
interviewed in their homes. Seven respondents consented to tape
recording the interviews while for the remaining five, the
researcher maintained detailed notes. While interviews were
conducted in Hindi, the national language (7 respondents), Marathi,
the regional language (3 respondents) and English (2 respondents),
all notes were kept in English. Thus, interviews recorded on audio
cassettes were translated into English during transcription and
those which were kept as field notes were also written in English.
There were 3 interview sessions with 1 caregiver, 2 sessions with 6
caregivers and 1 session with 5 caregivers.
Interviews were informant directed
in that they started at points which respondents wished to discuss.
Nonetheless, they covered the various areas of the interview guide
as well as explored issues emerging from the data. Probes and
prompts were used judiciously thereby allowing an open-ended
interview structure to be maintained.
During the period of data
collection, the researcher read the transcripts and field notes
carefully and repeatedly, 'immersing' herself in the data (Crabtree
1992). Immersion allowed the researcher to identify themes,
categories and patterns emerging from the data (Marshall & Rossman,
1999). This process was facilitated through the use of various
tools such as charts, matrices, event lists, causal networks and
memos (Miles & Huberman,
1994). Linkages, if any, with social support theory were made at
this juncture. Miles and Huberman's (1994)
tools were then used to examine the linkages between themes,
patterns and categories and thereby initiate interpretation (Patton,
1990). Proceeding in this manner, she developed various
understandings (such as concepts, causal linkages, processes, and so
on) of the phenomena under study. These understandings were used to
inform further data collection, through which they were tested and
challenged. Based on newer data, they were further developed,
thereby feeding back into the analysis (Marshall & Rossman,
1999). Iteration thus formed an integral part of the research
When all the data were collected,
the researcher immersed herself further in the transcripts and the
preliminary findings. Through the use of Miles and Huberman's tools
and memoing, she not only identified more patterns, themes and
categories in the data and look for interpretations at this level,
but also subsumed under major themes, those themes, patterns and
categories and their linkages within and across respondents that
held together in a meaningful yet distinct way (Guba,
1978). Interpretations based on this level of analysis were
Methodological rigour was
maintained through prolonged engagement (Lincoln & Guba,
1985), and consensual validation (Eisner,
1991) / peer debriefing (Lincoln & Guba,
1999). Prolonged engagement led the researcher to spend a lot of
time in the organisations where the data were collected. This gave
her a chance to observe patients accessing services from there and
to discuss her observations with the staff. Particular importance
was given to rapport building with the respondents - it was opined
that making the respondents feel comfortable and establishing their
trust would play a critical role in helping them to share their
stories. During the course of the interview, the researcher used
probes and cross-checks to better her understanding of respondents'
narratives. Immersion in the data during the process of analysis
helped the researcher gain insight into respondent experiences and
ensure the rigour of the findings. For peer debriefing and
consensual validation, the researcher shared her analysis procedures
and outcomes with academicians and practitioners. Academicians
working in the areas of HIV/AIDS, family care and qualitative
research methods as well as practitioners working in the field of
HIV/AIDS care and support reviewed the researcher's methods,
interpretations and findings, providing critical evaluations,
suggestions and feedback. The incorporation of their inputs
strengthened the analysis. This process continued till most, if not
all, the academicians and practitioners agreed on the analysis and
It is important to note that social
support theory partially guided the formulation of the interview
guide so that the researcher could holistically explore all aspects
of social support, as subjectively experienced by the respondents.
But data collection was in no way limited by theory and the in-depth
nature of the interview ensured that the understanding of social
support was furthered through respondent narratives. In keeping with
the phenomenological tradition, the experiences of the researcher
were not allowed to interfere with the inquiry - the researcher
suspended her own points of view (Creswell,
1998) allowing respondent perspectives to prevail. During the
analysis, respondents' narratives were examined for themes, patterns
and categories, and if these related to existing social support
theory/concepts, they were used to deepen knowledge of the same.
Other findings emerging from the data were used to expand the
understanding of social support.
Sources of support
Caregivers defined the informal
support system as close relationships from which they derived social
support. As a group, caregivers' informal support network comprised
the extended family/relatives and friends, though the composition of
individual caregiver support systems varied. A support system
comprising only extended family/relatives was described by 5
caregivers, whereas 6 caregivers spoke of extended family/relatives
and friends constituting their supporters. Among these, 2 specified
that their friends included religious people, and 1 included
religious leaders and professional colleagues. One caregiver had
only friends as her support network.
Types of support received
Caregiver descriptions of the kind
of support received pointed out to seven broad categories. These
included emotional support (11), material support (9), financial
support (8), medical support (1), informational support (2), network
support (3), and physical support in the execution of caregiving
Eight respondents reported that all
or some of the members of their informal support systems responded
to their observable needs.
"I have not told my (natal) family
about his (my son's) HIV, nor have I asked them for help. But they
know how hard things are for us. They know that he has thalassemia,
that he is not keeping well of late. They know that we are not well
off, and that now we have lots of tension and problems because of
money, his health, and so on. So on their own, they help us."
This was even though in some cases,
the support system did not know the care receivers' serostatus.
There were a few instances where spontaneous support was given only
for a limited period of time, either because the support system was
unable to help out for a longer duration or because knowledge of
care receivers' serostatus made the support system withdraw.
Respondents perceived the
spontaneous support as reassuring, but at the same time, mentioned
that since it was based on observation alone, it could not fulfil
all their needs.
Soliciting support involved
behavioural and affective dimensions. Behaviourally, caregivers
described a process involving a series of complex decisions that
they made, contingent on their circumstances, while affectively,
numerous competing feelings were reported.
The behavioural dimension
Accessing support from the informal support system was an easy,
taken for granted process prior to the knowledge of the care
receiver's seropositive diagnosis. Caregivers would frequently
approach their relatives and/or friends for assistance as and when
required, being inhibited only by a desire not to trouble others and
a feeling of shame to be dependent. Knowledge of the infected family
member's HIV diagnosis, however, because of its stigmatising nature,
changed their approach.
When support was required after the
HIV infected person's serostatus was diagnosed and the support
system was not aware of the diagnosis, the decision to solicit
support did not come easily. Deep deliberation and careful thinking
preceded the decision. Caregivers meticulously weighed the pros and
cons of whether they should seek out help. Firstly, they evaluated
their need to see if it demanded immediate attention or could be
postponed. In other words, they were willing to put off attending to
their needs until they became absolutely unavoidable. Once this was
resolved, then based on what they actually needed, they considered
possible sources of support. Of these, they shortlisted those who
were in the best position to help them out and from whom they were
comfortable receiving support. The next thing to decide upon was
whether support seeking should involve disclosure of the
seropositive diagnosis or not. Depending on the need and/or who they
were accessing support from, caregivers decided what exactly they
should tell and whether they should disclose their care receiver's
seropositive status during the process of accessing. More than
anything else, the need they were seeking to satisfy dictated the
necessity for disclosure. Some needs necessitated the disclosure of
the care receiver's HIV status and caregivers had no choice but to
"We (my wife and I) were looking
for a place where we could keep him (the positive care receiving
brother) till his TB (tuberculosis) subsided. We felt that though
HIV does not spread, TB does and since our children are small and
the house is tiny, if he lives with us, they may get it. But we knew
of no such place, so we decided to contact Father. ___ (a priest
known to the family) and Sister ____ (a nun known to the family), as
they were the only ones who could help us. And since we were looking
for something specific, we had to tell them that he had HIV. Even to
tell them we felt bad. But what to do? That way they are such great
people, we knew that they would never turn against us and they did
not. Of course not. That is why we did not mind approaching them,
but still we felt bad."
Where the need was not so specific
and could be fulfilled by a number of persons, a different process
operated. If families could trust the person from whom they were
seeking support with the secrecy of the diagnosis and be sure that
he/she would help them without being judgmental, soliciting support
was accompanied by disclosure, even if it was not needed or asked
for and could have been avoided. If, on the other hand, they were
not sure how the person would react, they would cover up their need
for support with a plausible excuse, refusing to take the risk of
being truthful. A process of discerning was thus apparent.
"See, I will approach those who I
will benefit from. And I will ask them for help. Now whether I tell
them the diagnosis or not, depends. My family will help in looking
after, but I will not tell them the diagnosis because they will
collapse, they may refuse to care. But I'll tell them such that they
will take precautions. With my professional friends, I can rely on
them for medical and emotional support, and they will keep it
confidential. So I can tell them the diagnosis. With my religious
friends, I go for emotional support and I'll tell them it is a
deadly illness. That would suffice."
Reluctance to solicit support and
fear to disclose the care receiving family member's HIV
seropositivity were very clearly seen even in instances where the
care receiver was said to be "innocently" infected and was not seen
as personally responsible for acquiring the HIV infection. One
caregiver, looking after a thalassemic seropositive adolescent who
had been parenterally infected through blood transfusions, was
hesitant to access support from the support network and did not see
disclosure as an option.
"We (my husband and I) have not
told anyone, except household members, about his HIV infection. Even
our extended family members do not know. People may or may not
understand, you never know. And if we tell and by chance, it slips
from their mouths to others, then our entire community will come to
know, and not everyone will be good and understanding. Even though
he has been infected due to a blood transfusion, and everyone knows
he is a thalassemic, once they are told he has this AIDS, one never
knows how people's minds will work - they may just insist that he
has done something wrong and then reject us. So instead of having
that tension, it is better to keep it to ourselves and manage on our
own. Of course, I feel it - the loneliness and pain are so acute, it
would be a relief to share them. But the risk always remains, so we
feel it is better to stay silent. What I tell you so easily and in
the process, experience so much relief, I cannot tell anyone."
Another caregiver, a doctor whose
HIV positive father had been infected through infected intravenous
(IV) equipment, decided that soliciting support and disclosure of
his father's serostatus would be only with his medical friends whom
he was sure would understand and could be counted upon to support
and maintain confidentiality.
The affective dimension
Caregivers reported that soliciting support was accompanied by a
plethora of feelings. Besides feeling bad that they were in a
position of dependency where they needed support and could not
manage on their own, they approached their support system with both
the hope of things improving and with the fear of being rejected,
and if there was disclosure of the care receiver's HIV status, then
the fear of the information being spread, and of inviting stigma and
isolation. There was also a feeling of helplessness and lack of
choice that led one to seek out the support in the first place.
Shame, humility and hope thus coexisted.
The emotional turmoil that
accompanied the decision to, and the process of, accessing support
got exacerbated when these requests were met with refusal.
Caregivers received these negative responses with great
disappointment and a sense of rejection, compounding their feeling
"I went to the village with such
hope. I felt that his (my husband's) brothers (who were there) would
do something for us. Here (in the city), there was no one to help
and I had to see to him, the children and the house. So we felt it
was better to go there to them. But they did not help. They said,
'We have no money, we have our own families, so we cannot help you.'
But I did not need money. Basically, it was because of AIDS that
they did not wish to come near. So they did not help. My brothers
saw to us. I felt very, very bad, but if they did not wish to help,
but what can be done?"
Such feelings were true even in
cases where the refusal came from only a part of the support
network, while the rest continued to support. Moreover, the
intensity of the feelings multiplied when soliciting support
involved disclosure of the care receiving family member's HIV
positive status, and the support system, in addition to refusing to
help, spread the serostatus within the social network. The caregiver
not only had to cope with less support than desired, but also with
the negative reactions of the social network.
"His (my husband's) brothers
refused to help. But as if that was not bad enough, they told
everyone. So people would not come near. They told the doctors, so
they refused to treat. They would not touch or examine him. I felt
totally alone and helpless. At least my brothers stood by me."
Yet, the decision not to access
support and/or to maintain the secrecy of the care receiver's
serostatus from the informal support system precipitated acute
loneliness in caregivers. This feeling of loneliness coexisted with
the receipt of spontaneous support, because such support could
address only their observable needs, leaving the rest unfulfilled.
Overall, all caregivers reported
receiving some support, either spontaneous and/or solicited, from at
least a part of their support system, for at least some period of
" I told my (natal) family that we
had AIDS. They understood what it meant but still, they behaved with
us as before and they helped us out as before. If they saw that we
needed help, they would at once respond. Or if I asked them, they
Caregiver perceptions of
Caregiver perceptions of their
experiences with their informal support networks varied along a
continuum of satisfaction-dissatisfaction, and were based on three
factors, namely, the content of support, the extent to which their
needs were met and their perceptions of the availability of support.
The content of support referred to
the presence of positive and negative components. Fulfillment of
needs moved through various degrees, from complete fulfillment to no
fulfillment at all. The perception of the availability of support
was linked to the willingness and ability (in terms of time,
resources, geographical proximity/distance, and so on) of the
support system to support.
At one extreme were 2 highly
satisfied caregivers receiving positive support that fulfilled many
of their needs and was perceived as easily available.
"With her (my sister) by my side, I
needed no one else. She went out of her way to help, and never once
a mean or hurtful word...no reproach or taunts...Her behaviour was
such that I knew that she was there, I only had to ask for what I
wanted, and she would never hesitate or hold back. It was
At the other end of the continuum
were 2 caregivers who were deeply dissatisfied. Though their support
networks were geographically proximate and capable of helping, their
reluctance to do so led caregivers to feel that support was only
somewhat available. Support system reluctance arose from their anger
towards the HIV infected individuals for their lifestyles and for
inviting problems into the family, and from their negative
perceptions of HIV infection and not from a lack of resources.
Moreover, since support often was inadequate and inappropriate, it
failed to meet the needs of caregivers and left a feeling of
dissatisfaction. One elderly mother looking after a seropositive son
in a joint household where her other son and his wife controlled
family resources stated:
"She (my other son's wife) is so
angry with him (my seropositive son) for getting this AIDS that,
though they (my other son and his wife) have enough money, she just
refuses to give me anything much to spend for him. Instead, when I
ask, she keeps grumbling that they have to do...and gives me the
bare minimum. It becomes really difficult for me to look after him
with this kind of an attitude but what to do?"
Between these two extremes lay two
sets of caregivers. In one group were caregivers in receipt of only
positive support that fulfilled many of their needs and was seen as
somewhat available. A satisfied feeling was apparent.
"Sister ___ (a nun) and Father ___
(a priest) have done alot for us (my family and my positive brother)
- whenever we need something, whatever they can do, they do. And
they never make us feel bad about it, they never point out that they
are doing so much for us. But finally, how much can one expect -
they have to help others too, so we ask only when there is no other
In the other group, four caregivers
expressed mixed feelings where both satisfaction and dissatisfaction
coexisted. In one case, the caregiver was receiving positive support
from one part of her support system, which was perceived as somewhat
available and as meeting some of her needs. She was happy with this.
But the other part of the support system refused to support her and
evoked dissatisfaction in her.
In another instance, a female
seropositive caregiver who had looked after her seropositive husband
had received high levels of positive support from her natal family.
She knew that despite their limited resources, if ever she needed
anything, she only had to ask them and they would do their best for
her. The support that she received helped her satisfy many of her
needs. Yet she felt that her natal family should have done more for
her. Thus, though she praised all that they had done for her and
acknowledged their constraints, dissatisfaction was also
" My people (natal family)
supported us a lot when he (seropositive husband) was alive - they
used to come, inquire if I needed anything, or I would phone and
tell them...money, food, coming to the hospital, looking after ___
(child), everything...so much they have done...even when he died, my
people saw to everything. They have their own families, their own
homes and jobs, and we are not well off people, but still, they
always accommodated my needs. Yet, I feel that they should have been
with me more - I used to be by myself in the hospital, they would
come for a few hours only. When he was admitted near by, I had to go
to their place to pick up the food and all, for every meal. I feel
that they should have come with it. But how I can tell them - they
should understand on their own, right? After all, they could see
that I was all by myself...I am ill too - so they should come over
here more often. If people are really around one, one feels much
better...And how can I keep asking them? I feel that they know my
condition, so they should do on their own. If I ask, they will
surely do. But why should I ask?...naturally I feel so alone."
This woman also reported anger over
the indifference of her in-laws.
"And those people (in-laws) even
after knowing that he (husband) was so ill, didn't ask a single
word. Once they knew he had this illness, they hardly came and
never, ever bothered. Their own son...but they did not care at all.
Everything was left to me. Don't even speak to me about them - they
fill me with such fury."
Negative feelings associated with
being in a position of dependency led caregivers' need, and ability,
to reciprocate taking on greater significance, in an attempt to
compensate for their predicament. Yet given their meagre economic
resources and role overload, most caregivers (8) could reciprocate
"I want to give her (my sister)
back something in return, for all that she has done for me. After
all, how much can one keep taking from others - it is not a nice
feeling - one should give also. But I have nothing so all I can do
is show her my concern and affection."
Reciprocating in tangible terms,
either through role performance or provision of economic resources,
was possible only for four caregivers.
"My (natal) family has helped me
out alot, given us so much. When he (my husband) was ill, and before
that also. But we were never able to repay them, because we had
absolutely nothing. Now at least (after his death), with his
provident fund/PF and my earnings, I have paid off the debts and I
can think of giving them something. In fact, I definitely will,
because they have done so much, and I feel so ashamed that we used
to keep taking, taking, asking, asking, without giving back."
Nonetheless, being able to give
back even a little bit, in whatever form, restored some sense of
dignity in caregivers.
"Even though I can give her (my
sister) only my concern and affection, it makes a difference. At
least, I am giving something back, and not only taking. So I feel
good about it. By showing her my concern and appreciation, I ease
her strain. She also feels that I am thinking of her, and not just
selfishly taking from her all the time."
In this age of structural
adjustment, decreased social welfare and reductions in health sector
allocations, community care has become the watchword for secondary
and tertiary health care interventions (Duggal,
1998). But community care is a mere euphemism for family care
(McCann & Wadsworth,
1992). In HIV/AIDS, these policies are promoted by the adoption
of the continuum of care model as the globally recognised and
recommended ideal form of intervention to deal with the infection
(See Global Programme on AIDS/GPA,
1995). The result is that family caregivers have to bear the
bulk of the responsibility for the care and support needs of their
sick members, experiencing considerable burden and adverse health
effects in the process (See D'Cruz,
2000). That caregivers need support to cope with the demands and
outcomes of their role requires no reiteration. But contemporary
policies have left very limited options from formal sources and have
augmented the roles and responsibilities of the informal support
system. Unfortunately, the study of caregiver support in relation to
informal networks has remained a largely unexplored area. To this
end, the present study has extended our understanding in the context
The findings have implications for
intervention. Firstly, they underscore the necessity for the
development of various caregiver services. These include counselling
services, the provision of material and financial assistance,
support groups and respite care services. In the case of an
infection like HIV/AIDS, such services assume significance because
the stigmatising nature of the infection limits support seeking from
informal sources and consequently, caregivers are left to fend for
themselves. At the same time, the extent to which these needs would
be taken cognisance of and responded to remains questionable in the
light of structural adjustment policies, cutbacks in health sector
expenditure and reduced social welfare. Nonetheless, their relevance
should not be overlooked.
Secondly, the findings of this
study suggest the importance for members of the informal support
system to be educated about and sensitised to HIV/AIDS. Such
endeavours could incorporate a two-pronged strategy. They could
provide knowledge about the infection, thereby dispelling myths and
misconceptions; and also descriptions of its demands and impact,
thereby bringing home the predicament of the caregiver. With this
information, members of support systems would be less likely to
withdraw from the caregiver and to provide negative support, but
instead would be more likely to rally around him or her.
Finally, the study points out to
the urgency with which public awareness about HIV/AIDS should be
created. Building up awareness would have two advantages. Firstly,
the community would be sensitised to the experiences of caregivers
and instead of discriminating against them, they would reach out to
them. Inappropriate support would also be eliminated. Secondly,
caregivers, being reassured of an understanding response, would come
forward and seek support.
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Sociodemographic profile of
Household income per month
Number of care receivers
Relationship with care receivers
Co-residence with care receivers
of the caregiver's informal social support system.
perception of the availability of social support.
- Types of
social support received by caregiver.
opinion on manner in which social support is given.
evaluation of social support received. Impact of social support on
- Process by
which caregiver seeks social support and its relationship with
disclosure of care receiver's serostatus.
reciprocity to the informal social support system.
D'Cruz, Ph.D., has a
Ph.D. in social science from the Tata Institute of Social Sciences,
Mumbai, India. She currently teaches behavioural sciences at the
Indian Institute of Management, Kozhikode, India. Her areas of
interest include family psychology, gender studies, creativity,
emotion, health studies and qualitative research methods.
She can be contacted at IIM
Kozhikode, P.O. Kunnamangalam, Calicut 673 571, Kerala, India. Her
email addresses are
D'Cruz, P. (2002, September).
Caregivers' experiences of informal support in the context of
HIV/AIDS. The Qualitative Report, 7(3). Retrieved [Insert
date here], from http://www.nova.edu/ssss/QR/QR7-3/dcruz.html