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“The only thing necessary for these diseases to the triumph is for good people and governments to do nothing.”

Palliative Care at Home: Reflections on HIV/AIDS Family Caregiving Experiences

Journal of Palliative Care

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


Abstract / 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 Sida.


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 caregiver .

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 caregiver burden. 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 marital status.


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 respite care.

Data Collection

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 "paradigm model"  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 caregiving

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 Caregiving. The 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 faggot-lover constantly.

This family anguish lead the mother to consider drastic action, something she had not previously disclosed:

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 one:

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.

Caregiving Strategies. 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 needs:

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.

Seeking support 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.

Taking charge 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 planning began:

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.


Influencing Conditions. 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 caregiving demands.

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 situation.

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 suicide:

... 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.

Consequences for Caregivers. 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 relationship.


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 role. 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 caregivers . 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.


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 must do.

Date received, January 17, 1997; date accepted March 20, 1997.


  1. 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.
  2. Pearlin LI, Semple S, Turner H. Stress of AIDS caregiving: a preliminary overview of the issues. Death Studies 1988; 12(5/6): 501-517.
  3. Turner HA, Catania JA, Gagnon J. The prevalence of informal caregiving to persons with AIDS in the United States: caregiver characteristics and their implications. Soc Sci Med 1994; 38(11): 1543-1552.
  4. Smith M, Rapkin BD. Social support and barriers to family involvement in caregiving for persons with AIDS: implications for patient education. Patient Educ Counsel 1996; 27: 85-94.
  5. Health and Welfare Canada. Caring Together: A National Conference for the AIDS Caregiver. Ottawa, Ontario: Minister of Supply and Service Canada, 1990.
  6. Martelli LJ, Peltz FD, Messina W, Petrow S. When Someone You Know Has AIDS. New York: Crown Trade, 1993.
  7. Tiblier K. Intervening with families of young adults with AIDS. In: Leahey M, Wright L (eds). Families and Life-Threatening Illness. Philadelphia: Springhouse, 1987; pp. 255-270.
  8. Worden JW. Grieving a loss from AIDS. In: Amenta MO, Tehan CB (eds). AIDS and the Hospice Community. New York: Harrington Park, 1991; pp. 143-150.
  9. Folkman S, Chesney MA, Christopher-Richards A. Stress and coping in caregiving partners of men with AIDS. Psychiat Clin North Am 1994; 17(1): 35-53.
  10. Barbo B. The Walking Wounded. Linsborg, Kansas: Carlsons, 1987.
  11. Brown MA, Powell-Cope G. Themes of loss and dying in caring for a family member with AIDS. Res Nurs Health 1993; 16(3): 179-191.
  12. Powell-Cope GM. The experiences of gay couples affected by HIV infection. Qualitat Health Res 1995; 5(1): 36-63.
  13. Ferrell JA, Boyle JS. Bereavement experiences: caring for a partner with AIDS. J Comm Health Nurs 1992; 9(3): 127-135.
  14. Powell-Cope GM. Family caregivers of persons with AIDS: negotiating partnerships with professional health care providers. Nurs Res 1994; 43(6): 324-330.
  15. Brown P, Davies B, Martens N. Families in supportive care. Part II: Palliative care at home: a viable care setting. J Palliat Care 1990; 6(3): 21-27.
  16. Holing EV. The primary caregiver's perception of the dying trajectory: an exploratory study. Cancer Nurs 1986; 9(1): 29-37.
  17. Hull MM. A family experience: hospice-supported home care of a dying relative. Unpublished doctoral dissertation. University of Rochester, New York; 1989.
  18. Martens N, Davies B. The work of patients and spouses in managing advanced cancer at home. In: Kirschling JM (ed). Family-Based Palliative Care. New York: Haworth Press, 1990: pp. 55-73.
  19. Steele R, Fitch MI. Needs of family caregivers of patients receiving home hospice care for cancer. Oncol Nurs Forum 1996; 23(5): 823-828.
  20. Chenoweth B, Spencer B. Dementia: the experience of family caregivers. Gerontologist 1986; 26(3): 267-272.
  21. Haley WE, Levine EG, Brown SL, Berry JW, Hughes GH. Psychological, social, and health consequences of caring for a relative with senile dementia. J Am Geriatr Soc 1987; 35(5): 405-411.
  22. Horowitz A. Family caregiving to the frail elderly. Ann Rev Gerontol Geriatr 1985; 5: 194-246.
  23. Marks R. Stress in families providing care to frail elderly relative and the effects of receiving in-home respite services. Home Healthcare Serv Quart 1987; 8: 103-130.
  24. Ross MM, McDonald B. Providing palliative care to older adults: context and challenges. J Palliat Care 1994; 10(4): 5-10.
  25. Dick LC. In the midst of winter: living, dying and grieving in the context of AIDS. [videocassette]. Seattle, Washington: Northwest AIDS Video Project, 1992.
  26. Shilts R. And the Band Played On: Politics, People and the AIDS Epidemic. New York: St. Martin's Press, 1987.
  27. Moffatt BC. When Someone You Love Has AIDS. New York: NAL Penguin, 1986.
  28. Takigiku SK, Brubaker TH, Hennon CB. A contextual model of stress among parent caregivers of gay sons with AIDS. AIDS Educ Prevent 1993; 5(1): 25-42.
  29. Barouh G. Support groups: the human face of the HIV/AIDS epidemic. New York: Long Island Association for AIDS Care, 1992.
  30. Tiblier KB, Walker G, Rolland JS. Therapeutic issues when working with families of persons with AIDS. In: Macklin ED (ed). AIDS and Families. New York: Harrington Park Press, 1989; pp. 81-128.
  31. Grief GL, Porembski E. AIDS and significant others: findings from a preliminary exploration of needs. Health Soc Work 1988; 13(4): 259-265.
  32. Matocha LK. The effects of AIDS on family member(s) responsible for care: a qualitative study. Unpublished doctoral dissertation. University of Delaware, 1989.
  33. Brown MA. Caregiver stress in families of persons with HIV/AIDS. In: Feetham SL, et al. (eds). The Nursing of Families. Newbury Park, California: Sage, 1992; pp. 211-223.
  34. Gold M. Same-sex benefits get cold shoulder. Vancouver Sun, Vancouver, British Columbia 1994; June 8: Sect. A:4.
  35. Sussman MB. AIDS: an opportunity for humanity. In: Macklin ED (ed). AIDS and Families. New York: Harrington Park Press, 1989; pp. 229-239.
  36. Sweet L. Dead Anglican priest's gay lover fights church for same-sex benefits. Vancouver Sun, Vancouver, British Columbia 1994; July 18: Sect. A:4.
  37. Brown MA, Powell-Cope GM. AIDS family caregiving: transitions through uncertainty. Nurs Res 1991; 40(6): 338-345.
  38. Ward D, Brown MA. Labor and costs in AIDS family caregiving. West J Nurs Res 1994; 16(1): 10-25.
  39. Irving G, Bor R, Catalan J. Psychological distress among gay men supporting a lover or partner with AIDS: a pilot study. AIDS Care 1995; 7(5): 605-617.
  40. Folkman S, Chesney M, Collette L, Boccellari A, Cooke M. Postbereavement depressive mood and its prebereavement predictors in HIV+ and HIV- gay men. J Personality Soc Psych 1996; 70(2): 336-348.
  41. Pearlin LI, Mullan JT, Aneshensel CS, Wardlaw L, Harrington C. The structure and functions of AIDS caregiving relationships. Psychosoc Rehab J 1994; 17(4): 53-67.
  42. Folkman S, Chesney MA, Cooke M, Boccellari A, Collette L. Caregiver burden in HIV-positive and HIV-negative partners of men with AIDS. J Consult Clin Psych 1994; 62(4): 746-756.
  43. Glaser BG. Advances in the Methodology of Grounded Theory: Theoretical Sensitivity. Mill Valley, California: Sociology Press, 1978.
  44. Strauss A, Corbin J. Basics of Qualitative Research: Grounded Theory Procedures and Techniques. Newbury Park, California: Sage, 1990.
  45. Burns N, Groves SK. The Practice of Nursing Research: Conduct, Critique and Utilization. Philadelphia: W.B. Saunders, 1987.
  46. Chenitz WC, Swanson JM. Qualitative research using grounded theory. In: Chenitz WC, Swanson JM (eds). From Practice to Grounded Theory. Don Mills, Ontario: Addison-Wesley, 1986; pp. 3-15.
  47. May CA. Interview techniques in qualitative research: concerns and challenges. In: Morse JM (ed). Qualitative Nursing Research: A Contemporary Dialogue. Newbury Park, California: Sage, 1991; pp. 188-201.
  48. Lincoln YS, Guba EG. Naturalistic Inquiry. Newbury Park, California: Sage, 1985.
  49. Boyd CO. Qualitative approaches to research. In: LoBiondo-Wood G, Haber J (eds). Nursing Research: Methods, Critical Appraisal and Utilization. 2nd edition. Toronto: C.M. Mosby, 1990; pp. 181-208.
  50. Corbin J, Strauss A. Grounded theory research: procedures, canons, and evaluative criteria. Qualitat Sociol 1990; 13(1): 3-21.
  51. Hutchinson S. Grounded theory: the method. In: Munhall PL, Oiler CJ (eds). Nursing Research: A Qualitative Perspective. Norwalk, Connecticut: Appleton Century-Crofts, 1986; pp. 111-130.
  52. Glaser B, Strauss A. The Discovery of Grounded Theory: Strategies for Qualitative Research. Chicago: Aldine, 1967.
  53. Seidel J. The Ethnograph: A User's Guide. Littleton, Colorado: Qualis Research Associates, 1988.
  54. Andelowski M. The problem of rigor in qualitative research. Adv Nurs Sci 1986; 8(3): 27-37.
  55. Brabant S. An overlooked AIDS-affected population: the elderly parent as caregiver. J Gerontol Soc Work 1994; 22(1/2): 131-145.
  56. Powell-Cope GM, Brown MA. Going public as an AIDS family caregiver. Soc Sci Med 1992; 34(5): 571-580.
  57. Gilbar O, Steiner M. When death comes: where should people die? Hospice J 1996; 11(1): 31-49.
  58. Costantini M, Camoirano E, Madeddu L, Bruzzi P, Verganelli E, Henriquet F. Palliative care and place of death among cancer patients: a population-based study. Palliat Med 1993; 7(4): 323-331.
  59. Hinton J. Can home care maintain an acceptable quality of life for patients with terminal cancer and their relatives? Palliat Med 1994; 8(3): 183-196.
  60. Lovejoy NC. Family responses to cancer hospitalization. Oncol Nurs Forum 1986; 13(2): 33-37.
  61. Hasselkus BR. Meaning in family caregiving: perspectives on caregiver/professional relationships. Gerontologist 1988; 28(5): 686-691.
  62. Broadhead WE, Kaplan BH, James SA, Wagner EH, Schoenback VJ, Grimson R, Heyden S, Tibblin G, Gehlbach SH. The epidemiological evidence for a relationship between social support and health. Am J Epidemiol 1983; 117: 521-537.
  63. Rolland JS. Anticipatory loss: a family systems development framework. Family Process 1990; 29: 229-244.
  64. Thorne SE, Robinson CA. Reciprocal trust in health care relationships. J Adv Nurs 1988; 13(6): 782-789.
  65. Thorne SE. Negotiating Health Care: The Social Context of Chronic Illness. Newbury Park, California: Sage, 1993.
  66. Lindgren CL. The caregiver career. IMAGE 1993; 25(3): 214-219.
  67. Clipp EC, Adinolfi AJ, Forrest L, Bennett CL. Informal caregivers of persons with AIDS. J Palliat Care 1995; 11(2): 10-18.


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