Care at Home: Reflections on HIV/AIDS Family Caregiving
Journal of Palliative Care 14:2/1998; 14-22
KELLI I. STAJDUHAR,
Doctoral Student, University of British Columbia School of
Nursing, BETTY DAVIES, University of British Columbia School
of Nursing and British Columbia Research Institute for Child
and Family Health, University of British Columbia,
Vancouver, British Columbia, Canada
/ This study explored the day-to-day experiences of family
members providing care at home for their dying loved one with
HIV/AIDS. In-depth interviews with seven caregivers were analyzed
using grounded theory qualitative methods. A conceptualization of
the family caregiving experience portrays HIV/AIDS caregiving as
an intense, emotional, and powerful experience filled with pride
and enrichment, and conversely, with anger and disillusionment.
Findings reflected a significant need for interventions designed
to provide direct and effective support for family members caring
for a loved one with HIV/AIDS.
Résumé / Cette étude porte sur l'expérience quotidienne des
familles et de leurs membres qui dispensent des soins à domicile à
leurs êtres chers dans la phase terminale du VIH-Sida. On a tenu
des interviews en profondeur avec sept soignants et les résultats
de ces rencontres furent analysés selon les méthodes qualitatives
de la théorie sur le terrain. La conceptualisation du vécu de ces
soignants représente cette expérience des soins à domicile auprès
du mourant atteint du VIH-Sida comme une expérience émotionnelle,
intense, profonde, enrichissante et remplie de fierté et mais
également remplie de colère et de découragement. Nos constatations
reflètent la nécessité d'établir des modèles d'intervention conçus
spécifiquement pour soutenir et encourager les soignants qui
s'occupent à domicile d'un être cher dans la phase terminale du
HIV infection and AIDS produce
phenomenal challenges to our health care system and to the
caregivers who provide the majority of home-based care to their
loved ones at the endstages of life . In addition to fatigue,
emotional and physical exhaustion, and financial burden , HIV/AIDS
caregivers often face the withdrawal of friends and regular
support systems , societal stigmatization , multiple losses , and
adversarial relationships with health care providers . While
research is available on the impact on families who provide care
to persons with cancer and to the frail elderly, there is
little that addresses how HIV/AIDS caregivers, who provide
palliative care in the home setting, deal with the unique
challenges they face. Additionally, many caregivers are themselves
infected with HIV and are often witness to the decline and death
that they too may someday experience . The multiplicity of
societal taboos associated with HIV/AIDS and the fear of contagion
also pose unique challenges for caregivers . Moreover,
HIV/AIDS-related stigma can lead caregivers into a conscious
conspiracy of silence where illness or death is attributed to
other causes such as cancer (.
Toward this end, caregivers often terminate usual support systems,
leading to growing feelings of isolation and burden . Juxtaposed
with these issues is the traditional definition of family that is
generally accepted by North American society. Consequently, many
HIV/AIDS caregivers are rejected from the traditional family
system , are viewed as having stigmatized lifestyles , and are
isolated from the usual support systems shared by many traditional
families . Concurrently, insurance, housing, and survivor benefits
are often withheld from those outside of the traditional family,
leading to poverty and inadequate housing for the surviving
Research on HIV/AIDS family
caregiving has most recently focused on describing HIV/AIDS family
caregiving experiences, psychological distress , depressive mood
predictors , the effect of HIV infection on gay couples,
the structure and functions of AIDS caregiving relationships,
barriers to family involvement in HIV/AIDS caregiving , and
While this research provides important information on the
experiences of HIV/AIDS family caregivers, it is limited in
addressing the experience of those who provide care to persons
living with HIV/AIDS (PLWHIV/AIDS) who are dying at home and
planning for a home death. Thus, in order to gain an understanding
of what day-to-day life is like for caregivers in the palliative
phase, an exploration and description of the experiences of
caregivers who provided home-based palliative care was warranted.
For the purpose of this study, a caregiver was defined as any
individual that the PLWHIV/AIDS identified as being significant to
him or her, regardless of kinship ties, common household, or
Grounded theory, a qualitative
research method, was used to examine the processes through which
family members cared for their dying loved one in the context of
the home setting. Grounded theory techniques are useful in
contributing to a knowledge base that has not been subjected to
much formal inquiry and about which little is known. As such, this
method allows for the flexibility that was required for the
exploratory nature of this study. As Glaser points out, it is a
method that frees one to "discover what is going on, rather than
assuming what should be going on". Accordingly, the qualitative
holistic approach of ground theory served as a valuable heuristic
in understanding and explaining this human experience.
Participants were recruited
from both AIDS community agencies and home health care providers.
Theoretical sampling ,
a form of non-probability sampling, was used to deliberately
select participants based on the theoretical needs of the study.
The sample consisted of seven family caregivers ranging in age
from 31 to 65 years. Four of the seven participants had been
partners or lovers in a gay relationship, two were mothers, and
one, a sister. All participants had shared the same household with
their loved one throughout the caregiving experience. Two
participants had relocated from their permanent place of residence
to engage in caregiving. More than half of the sample had
post-secondary education, and at the time of caregiving two
participants had been employed full-time and one part-time outside
the home. Two participants had been unemployed and had received
income assistance, one had been unemployed with no income
assistance, and one was retired. All the PLWHIV/AIDS but one had
died within the year prior to the caregiver interviews. As such,
six of the seven interviews (conducted in 1995) were retrospective
and occurred between six months to one year following the death of
the PLWHIV/AIDS. All caregivers had anticipated and desired that
their loved one die at home. Four of the six deaths occurred at
home while two occurred after being admitted to hospital for
Data were collected by
unstructured, in-depth, face-to-face interviews. All of the
interviews began with an open-ended prompt such as, "Tell me what
an average day is/was like for you." The purpose of this approach
was to elicit the participants' perspectives with as few probes as
possible. As the data analysis progressed from the earlier
interviews, the nature of subsequent interviews changed with
questions becoming more specific. This specificity assisted in (a)
gaining further information, (b) testing preliminary findings, and
(c) looking for commonality and difference in the participants'
stories . Interviews lasted from two and a half to four hours.
Observational field notes and theoretical memos and diagrams
were also used during data collection to ensure a more accurate
and thorough recollection of the circumstances surrounding the
interview and participants' experience. Data were also obtained
from newspaper clippings and a review of videos pertaining to
HIV/AIDS family caregiving experiences. This collection and review
served to "ensure density and provide multiple perspectives for
illuminating social phenomena". Additionally, a personal journal
was kept throughout the research process to assist in sustaining
heightened levels of awareness during the study, as Hutchinson
suggests that, "only through self-awareness and mindset can the
researcher begin to search out and understand another's world."
Interviews were audiotaped,
transcribed, and subjected to qualitative data analysis. Constant
comparative analysis ,
a process of constantly comparing the data for similarities and
differences, guided the data analysis, thus capturing all
potentially relevant aspects of the data as soon as they were
perceived. Transcription and analysis of the interviews began
immediately following the first interview and proceeded by
analyzing the transcribed interviews, line by line, highlighting
important ideas and themes. Each theme was then coded and recoded
using the Ethnograph computer program . Codes were then grouped
together and sorted into categories. As the categories emerged,
they were examined and linked together. Through the repeated
analysis of the data, categories were tested against the interview
data, revised, and modified until core categories were identified
which pulled all of the identified categories together and
explained most of the variation in the data. Several research
processes thus occurred simultaneously. This method of data
processing involved moving back and forth between data collection
and analysis, ultimately leading to the construction of a
or conceptualization of HIV/AIDS family caregiving.
Validity and reliability were
addressed using criteria appropriate for qualitative research.
Credibility, concerned with the lived experience as perceived by
the participants, and fittingness, the ability to fit the data
into the findings from which they were derived, were achieved by
ensuring that conceptual categories could be verified against
statements in the interview data and by participants in the study.
Follow-up interviews were conducted with two participants, and all
participants were sent a summary of the analysis. Participants
were asked to comment on the truth of the descriptions and
impressions derived from the interviews in order to verify the
validity of the data analysis. Preliminary findings were also
presented to HIV/AIDS family caregivers who did not participate in
the study and to health care providers at a national HIV/AIDS
conference to confirm that the findings reflected their
experiences. Data sources (making comparisons of the interview
data) and data collection procedures (interviews, personal
journal, observational field notes, newspaper clippings,
theoretical memos and diagrams) were also triangulated to
determine the congruence among them.
Auditability was achieved by
ensuring that a clear decision trail was detailed in the final
research report so that others could follow the progression of
events in the study and understand its logic. For example, data
collection and analysis procedures were described, explained, and
justified in detail. Furthermore, the researcher shared all steps
of the decision trail with thesis committee members.
Confirmability or freedom from bias was established by debriefing
and reflective journaling.
This study resulted in a
conceptualization of HIV/AIDS family caregiving While the paradigm
model depicts a somewhat linear process, in actuality it is meant
to characterize the relationship between the categories. Since
each category contains various subcategories, they are presented
separately but should be viewed in the context of the whole.
A conceptualization of HIV/AIDS family
Promising To Fulfill
Wishes. Those with
HIV/AIDS wanted very much for their partner or family member to
provide care for them, be with them, and ensure that they were
able to die at home if possible. In response, caregivers promised
to fulfill their loved one's wishes.
Caregivers stressed that their
loved one preferred to die at home because of fear of or aversion
to dying in an institution and being cared for by "strangers."
Caregivers felt a sense of fulfillment when they were able to keep
their promise, speaking of "giving him his last wishes." While
most caregivers were able to fulfill their loved one's wish, they
often felt unsupported by health care providers, but threats to
withdraw services only strengthened their commitment:
I almost felt like I was being
threatened -- that they were going to pull all the help away ...
and I thought, fine, you do that ... he's not leaving this
apartment until it is over. That was my promise.
The Work of HIV/AIDS
work involved in HIV/AIDS caregiving exerted a significant
influence on caregivers' lives and permeated the entire caregiving
experience. Caregivers described their work as a "cycle", a
"responsibility", and as "overwhelming", "ongoing", and
"never-ending." Family members differentiated personal from
pragmatic work. Personal work involved reconciling that a loved
one would eventually die, making life-and-death decisions, and
letting go. Practical work included the more hands-on aspects such
as doing for, monitoring and assessing, managing symptoms, and
coordinating care. Caregivers often wanted and needed to be
involved extensively in their loved one's care, even at the
expense of their own independence. Caregivers considered the work
a "willing sacrifice," but it was not without costs:
I didn't realize just how much
wear and tear it was on me ... You just don't realize just how
much of yourself you are giving ... You give your entire life so
that you can care for this person.
The Context of HIV/AIDS
Work. The work of
HIV/AIDS family caregivers occurred within the context of
uncertainty and stigma. Feelings of uncertainty
pervaded the lives of caregivers and arose from the perpetual and
unpredictable changes accompanying HIV/AIDS. Uncertainty meant
that family members had little control over day-to-day events:
... the uncertainty of all of
this has been the most difficult thing to deal with ... the
unpredictability of it all ... it was like this huge roller
coaster that never seemed to end.
Even when caregivers "knew"
that the death of their loved one was near and were able to
prepare and make plans for the impending death, uncertainty arose:
... I called the funeral home and
said, "I think this is the day he is going to die." A few days
later he was sitting up in bed reading the sports page.
All participants experienced
stigmatization in one form or another. They had to deal with
prejudice, loss of friendships and relationships, and living with
secrecy. A mother talked at length about the stigmatization that
her family experienced as a result of caring for her dying son:
My daughter had to be taken out
of school ... she was physically and mentally harassed something
awful and the school was not able to guarantee her safety ... she
ended up being on medication because she was so terrified ...
several times her windshield was smashed at school ... things were
scrawled on her car ... she was spat upon and (she was) called
This family anguish lead the
mother to consider drastic action, something she had not
Actually I'll tell you something
I haven't told many people ... At one point ... I had considered
killing myself and my family. Isn't that a terrible thing to say?
It just seemed that we were being inundated from everywhere.
Sources of stigmatization
included friends, relatives, and health care providers. For
example, participants told stories of home health care workers
coming dressed in plastic to do housekeeping tasks. Others
described how hospital workers avoided contact with their loved
We always had to be there (at the
hospital) ... one time we left and he had woken up and had to
urinate ... he was hooked up to IVs and the sides were up on his
bed so he buzzed the buzzer ... nobody answered ... he tried to
climb out of bed and he fell ... by the time we got back, he had
hypothermia ... when we arrived he was still on the floor and the
buzzer was still on.
Stigmatization also motivated
family members' hiding or keeping secret the HIV/AIDS diagnosis.
Fear of being shunned or pitied by others or of losing employment
placed caregivers in the uncomfortable position of masking what
was going on in their lives. Even when caregivers wanted to
disclose the reason for their loved one's illness, they were often
encouraged to "keep the secret" in an effort to protect others. A
gay man, caring for his dying partner explained:
I lied about the relationship. I
just said it was my son. I said, my son is terminally ill and he's
going to die ... I felt really shitty about that. But I knew I
couldn't say anything.
Caregivers developed and utilized various strategies to assist in
dealing with, managing, expressing, or responding to the work of
caring for their loved one. For example, caregivers expressed
their commitment to care for their dying loved one at home by
being with them: "I don't know what I'd do if I couldn't be
with him," and, "It's just the place I had to be." Getting out
was another strategy -- it enabled caregivers to get a break
from the constant and relentless demand of caregiving and allowed
them to continue their work and cope with and express feelings
associated with the caregiving situation. However, getting out was
not always easy for caregivers who were often hesitant to leave
their loved one alone or in the hands of another person. But, when
trusting relationships were formed, getting out was possible:
It's so important to have that
person that you can trust ... I didn't want to leave him with just
anybody ... (I needed to) trust somebody so that I could actually
go out for a walk or something and I wouldn't have to worry.
Caregivers tried to
maintain balance between meeting their loved one's needs while
caring for themselves. Some caregivers had difficulty maintaining
balance, frequently "putting themselves on the back burner."
Caregivers worried about the consequences of neglecting their own
I decided that I wanted whatever
(support) I could get. I was running on nothing but adrenaline. I
wasn't sleeping properly. I wasn't eating properly ... I was
trying to get my energy up because I knew that if I went down, we
were going to be in big trouble.
assisted caregivers with their
personal work when they found someone with whom they could express
their emotions related to their caregiving situations, and with
pragmatic work when practical support was found. Caregivers
utilized both formal and informal support systems. Formal support
systems included agencies such as home support and home nursing
care. Help with laundry and house cleaning greatly alleviated the
amount of work for caregivers, as did practical caregiving tips.
Family members appreciated the help received from these agencies,
especially when they developed a trusting relationship with a
consistent care provider:
I can talk to her (the nurse)
about anything ... she shows me different ways to do things
instead of me finding out for myself. Like turning him ... she'll
explain to me about keeping him from getting sore. Anything I want
to know. She says, just call if there's anything.
Formal support services also
included support groups to deal with issues related to loss and
grief and volunteers from HIV/AIDS service organizations who would
often stay with the PLWHIV/AIDS while caregivers tended to grocery
shopping or other day-to-day activities required for caregiving.
Informal support systems
consisted of other family members and friends who offered a
"listening ear" and were understanding of the caregivers'
situation. One participant talked about the support he received
from friends who were part of a care team he had organized to care
for his partner:
The friends that were on the care
team are still my friends and will remain good friends for a long
time ... they automatically supported me. They would stay with me
for an hour after I got home (from work), just stay and talk and
see how I was doing.
Some caregivers failed to seek
support, believing that they were placing a burden on others. One
participant emphasized how she was reluctant to call upon health
care providers because they were "busy with their work."
Some caregivers managed by
working as a team with health and social service providers,
friends, volunteers, and other family members. This strategy was
especially important for caregivers who were seeking "practical
tips" for caring for their loved one at home and who found support
and appreciation from other members of the team. This strategy was
dependent upon caregivers' ability to develop consistent
relationships with team members based on reciprocal trust and
respect. Not all caregivers were able to develop these
relationships. Some, raised in a generation where "doctor knows
best," preferred to be told by others what should be done. Most
caregivers found it difficult to work as a team when others,
specifically health care providers, had difficulty relinquishing
control and engaging in participatory care. In these situations,
caregivers employed taking charge as a strategy to initiate action
or advocate on behalf of their loved one.
was necessary when caregivers' knowledge of the loved one's
condition was disregarded or ignored:
I find it really frustrating that
the people that were caring for him (health care providers) would
quite often discount my opinion ... I had to be really firm and
say, this is what I want to happen and this is what is going to
happen, before I would get a response.
Caregivers also took charge
when they and professional care providers disagreed. Because of
their constant monitoring and assessing, caregivers usually
noticed, more quickly than others did, when treatment regimes and
therapies required reassessment. Caregivers, however, felt they
were often not heard and had to work even harder to obtain comfort
for their loved one. One man was having difficulty giving oral
medications to his partner who had severe dysphagia; he had to
take charge of the situation in order to facilitate change:
He could barely swallow ... (I
questioned), "Why are you giving him these oral medications? It
takes hours to get these pills down" ... I mean, I'm telling them
what to do, otherwise nothing would have happened.
A final strategy caregivers
used was planning for death. This included discussing
advance directives, living wills, powers of attorney, and planning
for the funeral or memorial service. Knowing their loved one's
wishes gave caregivers a sense of confidence and helped to
circumvent potential problems with other family members. Some
caregivers did not plan for death until days before the event,
usually due to their difficulty in accepting the inevitable
outcome. But, once caregivers realized death was imminent, their
I had to get my ass in gear. I
had to get power of attorney ... a will. I had to get all of that
done because none of it had been done ... I myself did not want to
have to come to terms with it.
Three conditions influenced the work of caregiving: (a) the
structure of the health care and social service systems, (b) the
accessibility of services, and (c) the nature of support. These
factors both helped and hindered caregivers' experiences.
Caregivers repeatedly talked about the rigid, impersonal, and
demeaning systems that disregarded and diminished their experience
and left little room for individualized, consistent, and
compassionate care. Caregivers had difficulties dealing with
physician-dominated systems and often witnessed hierarchy and
power struggles between physicians and nurses. They suggested
multiple care providers led to inconsistent approaches and
contributed to "revolving door" syndromes. Instead, they saw the
need for a "new medicine" that actualizes the interdisciplinary
concept. When systems were organized to provide consistent help,
caregivers developed trusting relationships with care providers.
Only then were they truly able to obtain relief from their
Challenges to caregivers came
not only from the health care system but from the social services
system as well. Problems in obtaining financial assistance meant
expending time and energy to advocate and lobby on behalf of their
loved one. Caregivers felt humiliated at having to constantly ask
for money to pay for necessities such as medications, dental work,
and basic living expenses. Therefore, caregivers appreciated
social service providers sometimes "breaking the rules." But when
empathetic social service workers were not found, caregivers were
forced to "cheat" and "fight" the system.
Easy and prompt access to
health care services greatly assisted caregivers in their work.
Prompt service often prevented hospitalization, thereby enabling
caregivers to be with their loved one, especially at the time of
death. Timely access to services, however, was only achieved when
systems were organized to respond promptly or when health care
providers were willing, able, and flexible enough to give of their
time and support. In most instances, caregivers experienced
problems accessing services when they needed them the most:
... the people that you really
needed were the ones who were sort of doling it out bit by bit ...
it was like, I need help and I need help now. Not next week! He
may not even be here next week. I mean, it was this kind of
The nature of support
caregivers received greatly influenced their ability to implement
caregiving strategies. Caregivers defined "good" support in
relation to individuals with whom they had contact. Such
individuals were described as nurturing, caring, sensitive,
flexible, available, committed, capable, compassionate, and
knowledgeable. Caregivers appreciated having their hard work
acknowledged; the feeling that "nobody understands" permeated the
lives of many caregivers. When acknowledged, caregivers felt a
sense of personal worth, knowing that their work was not in vain.
Unfortunately, interactions with unsupportive individuals were
common and left caregivers feeling angry, bitter, isolated, and
disillusioned. For example, one caregiver described a shocking
incident in which a physician sexually abused his partner. Another
caregiver recalled a horrifying experience when her son attempted
... he tried to kill himself with
an overdose of morphine and sleeping pills ... within an hour he
started to throw up ... I didn't know what to do so I called the
emergency response team and they said they couldn't help.
Caregivers tried to make sense
of why health care providers were unsupportive, mentioning heavy
workloads, few opportunities for debriefing stressful work
incidents, and health care providers' fear of working with those
with HIV/AIDS. Caregivers perceived that care providers lacked a
supportive manner because they were unsupported themselves in
their own work environments. Caregivers frequently witnessed high
levels of provider burnout. They recommended that employers be
more responsive and sensitive to their staff.
Caregiving for a loved one with HIV/AIDS had its own consequences.
When caregivers were able to seek support, they were better able
to use other strategies as well. When they implemented several
strategies, they felt a sense of pride in what they had
accomplished, found meaning in their experiences, and made sense
of their loss and the experience they had endured. For many, their
experiences helped them to learn new things about themselves and
to view their work differently. Their new world view often
included a renewed sense of inner strength, spirituality, and a
strong belief in life after death:
Our paths will cross again ... on
some plane and on another level. I never used to think that before
but now I'm convinced ... I'm convinced that things just don't
happen, they happen for a reason.
They assimilated their
experiences and made constructive changes in other aspects of
their lives. Those who found meaningful support reemerged to face
life without their loved one.
Conversely, caregivers who did
not find supportive networks felt angry, isolated and alone,
disillusioned, and mistrusting. Lack of support left them feeling
cynical and skeptical about a system that they presumed was
designed to support caregivers:
I'm a lot more skeptical ... I
certainly don't have the respect for the medical community that
most people do. My confidence level in the whole system is really,
really poor. I just don't trust anyone.
These feelings contributed to
caregivers feeling resentful and "stuck" in their grief. They
resolved to avoid similar situations in the future; some
participants vowed to never again enter a relationship with an
HIV-positive man. One participant, for example, now asks for
evidence of HIV status prior to engaging in any personal
The topic of HIV/AIDS
caregiving has been widely studied and many aspects of the
experiences of caregivers in this study have been reported.
Generally, there is agreement that the experience of HIV/AIDS
caregivers is relentless and marked by the constant monitoring of
their loved one's health status, including personal and nursing
care , managing symptoms associated with the disease ,
and reconciling the multiple losses inherent in the caregiving
The literature also supports observations that HIV/AIDS caregiving
frequently occurs within the context of uncertainty and is
characterized by the unpredictable changes associated with
HIV/AIDS . Furthermore, stigmatization by health care providers,
friends, family, and society in general is a common experience for
Similarly, the findings in this study support the work of other
authors who have reported that caregivers utilize various
strategies to deal with the demands of caregiving. For instance,
Irving et al.
reported that HIV/AIDS caregivers seek support from both formal
and informal sources and suggest that while many caregivers are
satisfied with the support received, a large proportion of
caregivers also reported dissatisfaction. Other authors have
suggested that health care providers play an important role in
helping HIV/AIDS caregivers to manage the multiple burdens and
demands of caregiving. These authors recommended that working in
partnership and acknowledging the valuable contributions of
caregivers would assist caregivers with their work and support
them in finding positive meaning in their experiences . Finally,
the need for a strong advocate to take charge in difficult
situations has also been reported.
While the challenges inherent
in providing care to those with HIV/AIDS in relation to the health
care system have been documented, these challenges often refer to
in-hospital care or to care in the home for PLWHIV/AIDS who may be
chronically ill but not terminally ill. Thus, this study
illuminates an added dimension in articulating the challenges
faced by those who offer terminal care in the home setting and the
concurrent challenges of accessing services and negotiating
relationships with home health care providers during the terminal
phase. In this study, HIV/AIDS family caregiving was an intense,
emotional, and powerful experience filled with pride and
enrichment, and conversely, with anger and disillusionment.
HIV/AIDS caregiving demanded considerable time, energy, and
commitment that often went unrecognized and unsupported. Currently
there is a body of literature that strongly advocates home-based
terminal care and home death.
As such, this study adds to our knowledge and indicates a
significant need for interventions designed to support family
members in caregiving at home.
GUIDELINES FOR INTERVENTION
Research on caregivers of
persons with cancer and the frail elderly reveal that teamwork by caregivers and professionals contributes
to caregiver confidence. When HIV/AIDS caregivers are considered
part of the health care team and are supported by its members,
they are empowered to utilize various strategies. By building
collaborative partnerships, health care providers are better able
to identify the individual needs of caregivers and respond to
their unique situations. One way of building supportive networks
is to ensure that services respond to the often urgent need for
help in the home. Prompt access to home care services was an
essential factor that allowed caregivers to continue to care for
their loved one at home. Restructuring of care delivery systems is
also needed to reduce the multiplicity of health care personnel
with whom caregivers come into contact. Health care providers must
make the extra effort to ensure the best possible fit between the
resources and the patient and family caregiver. A caregiver who
receives unsuitable or unsupportive services may reject the entire
concept of care and support and perceive the experience as yet
another example of failure of the health care system to meet his
or her needs.
Social support appears to be a
necessary component for bereavement resolution. Rolland
noted that in HIV/AIDS family caregiving, the process of family
coping is severely compromised by societal stigma and lack of
support, fostering isolation. A heightened awareness of the
relationship between social support and caregivers' experiences is
critical to assist health care providers in understanding how
their behavior may affect caregivers. Reciprocity and trust were
also essential in developing effective relationships with health
care providers. Research conducted among individuals with chronic
illnesses supported the view that reciprocal trust is a necessary
component of satisfying effective health care relationships.
Such relationships enabled caregivers to seek support and respite
from their daily caregiving demands.
This study advances our
understanding of the HIV/AIDS family caregiving experience in the
terminal phase. Nonetheless, significant gaps exist in the
research literature. While work has been identified as a
significant part of cancer
and frail elderly caregiving experiences, few studies focus
on the work of HIV/AIDS caregivers in the terminal phase. Further
investigation with larger numbers of individuals in differing
circumstances are required to validate and further develop the
concept of work as it relates to the management of HIV/AIDS at
home. As well, studies addressing caregivers' needs and their
perceptions of helpful and unhelpful behaviors from health care
providers would clarify how to design and implement effective
support programs for those caring for a dying loved one at home.
Providing effective terminal
care and support in the home is presently hampered by a lack of
adequate research into coping responses, skills, and difficulties
of HIV/AIDS family caregivers. It is important that future
research into this area be systematically built upon a sound basis
of qualitative findings so that our knowledge of caregivers'
experiences is accurate. When working with HIV/AIDS caregivers it
is imperative to understand their experiences and the work they
Date received, January 17,
1997; date accepted March 20, 1997.
- Raveis V,
Siegel K. Impact of caregiving on informal and formal
caregivers. In: Community-Based Care of Persons With AIDS:
Developing a Research Agenda. Washington, DC: US Government
Printing Office, 1990; pp. 17-28.
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