This article describes assets and needs of seven older HIV-affected family caregivers in the Boston area who participated in qualitative interviews in 1998. The study invited caregivers' unstructured narratives, hearing what they had to teach informal and formal caregivers, and documenting a broad range of concerns. When invited to describe their realities, these seven caregivers showed great resilience and were able to find blessings in their lives of caregiving. However, they also experienced stress that was at times overwhelming. This exploratory study suggests that older HIV-affected caregivers may feel stressed and blessed by the same elements in their lives: their own emotional reactions, their relationships with the care recipients, and their sense of social justice. As practitioners seek out and encounter older HIV-affected caregivers, it would be useful to keep in mind that they are likely to have emotional pluses and minuses; they experience both benefits and deficits in the care relationship; and they may have a passion for justice yet feel downtrodden by discrimination. Rather than dichotomizing caregiving into strains and gains, it may be more useful to see these characteristics not as juxtaposed opposites but as a fluid and interactive dynamic.
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References
1.
AllersC. T. (1990). AIDS and the older adult. The Gerontologist, 30(3), 405–407.
2.
AverittD. (2000). HIV/AIDS and social work: The medical context. In LynchV. (Ed). HIV/AIDS at year 2000: A sourcebook for social workers, (pp. 1–17). Boston: Allyn & Bacon.
3.
BennerP. (1994). The tradition and skill of interpretive phenomenology in studying health, illness, and caring practices. In BennerP. (Ed). Interpretive phenomenology: Embodiment, caring, and ethics in health and illness (pp. 99–127). Thousand Oaks: Sage.
4.
BrabantS. (1994). An overlooked AIDS affected population: The elderly parent as caregiver. Journal of Gerontological Social Work, 22(1/2), 131–145.
5.
BrodyE. M. (1985). Parent care as normative family stress. The Gerontologist, 25(1), 19–25.
6.
BurnetteD. (1997). Grandmother caregivers in inner-city Latino families: A descriptive profile and informal social supports. Journal of Multicultural Social Work, 5(3/4), 121–137.
7.
BurtonL. M. (1992). Black grandparents rearing children of drug-addicted parents: Stressors, outcomes, and social service needs. Gerontologist, 32, 744–751.
8.
BurtonL. M., Dilworth-AndersonP., & Merriwether-deVriesC. (1995). Context and surrogate parenting among contemporary grandparents. Marriage and Family Review, 20(3/4), 349–366.
9.
Centers for Disease Control and Prevention. (1999). HIV/AIDS surveillance.Atlanta, GA: Author.
10.
CallandroG., & HughesC. (1998). The experience of being a grandmother who is the primary caregiver for her HIV-positive grandchild. Nursing Research, 47(2), 107–113.
11.
CatesJ. A., GrahamL. L., BoeglinD., & TielkerS. (1990). The effect of AIDS on the family system. Families in Society, 71, 195–201.
12.
CheslaC. A. (1994). Parents' caring practices with schizophrenic offspring. In BennerP. (Ed). Interpretive phenomenology: Embodiment, caring, and ethics in health and illness (pp. 167–184). Thousand Oaks: Sage.
13.
CowgerC. D. (1994). Assessing client strengths: Clinical assessment for client empowerment. Social Work, 39(3), 262–268.
14.
DelgadoM. (1999). Social work practice in nontraditional urban settings, New York: Oxford University Press.
15.
Dilworth-AndersonP., WilliamsS. W., & CooperT. (1999). Family caregiving to elderly African Americans: Caregiver types and structures. Journals of Gerontology: Series B: Psychological Sciences and Social Sciences, 54B(4), S237–S241.
16.
FujiuraG. T., & BraddockD. (1992). Fiscal and demographic trends in mental retardation services: The emergence of the family. In RowitzL. (Ed.), Mental retardation in the year 2000 (pp. 316–338). New York: Springer-Verlag.
17.
FredriksenK. I. (1996). Informal caregiving: Current trends in public policy and service provision. Journal of Clinical Geropsychology, 2(1), 37–50.
18.
Fuller-ThomsonE., MinklerM., & DriverD. (1997). A profile of grandparents raising grandchildren in the United States. The Gerontologist, 37, 406–411.
19.
GermainC. B. (1991). Human behavior in the social environment: An ecological view.New York: Columbia University Press.
20.
GlaserB., & StraussA. (1967). The discovery of grounded theory.Chicago: Aldine.
21.
Goldberg-GlenR., SandsR. G., ColeR. D., & CristofaloC. (1998). Multigenerational patterns and internal structures in families in which grandparents raise grandchildren. Families in Society79, 477–489.
22.
GutheilI. A., & ChichinE. R. (1991). AIDS, older people, and social work. Social Work, 16(4), 237–244.
23.
HaydenM. F. (1992, August). Adults with mental retardation and other developmental disabilities waiting for community based services in the U.S. Policy Research Brief, 4(3), Minneapolis, MN: University of Minnesota, Center for Residential Services and Community Living.
24.
HepworthD. H., RooneyR. H., & LarsenJ. A. (1997). Direct Social Work Practice: Theory and Skills (5th ed.). Pacific Grove, CA: Brooks/Cole.
25.
HerekG. M., MitnickL., BurrisS., ChesneyM., DevineP., FulliloveM. T., FulliloveR., GuntherH. C., LeviJ., MichaelsS., NovickA., PryorJ., SnyderM., & SweeneyT. (1998). AIDS and stigma: A conceptual framework and research agenda. AIDS and Public Policy Journal, 13(1), 36–47.
26.
JendrekM.P. (1994). Grandparents who parent their grandchildren: circumstances and decisions. The Gerontologist, 34(2), 206–216.
27.
JoslinD. (1995). Older adults as caregivers in the HIV/AIDS epidemic. Coalition on AIDS in Passaic County Winter newsletter. N.J.: Coalition on AIDS in Passaic County.
28.
JoslinD., & BrouardA. (1995). The prevalence of grandmothers as primary caregivers in a poor pediatric population. Journal of Community Health, 20(5), 383–401.
29.
KelleyS. J. (1993). Caregiver stress in grandparents raising grandchildren. Image: Journal of Nursing Scholarship, 25(4), 331–337.
30.
KellyT. B., & KropfN. P. (1995). Stigmatized and perpetual parents: Older parents caring for adult children with lifelong disabilities. Journal of Gerontological Social Work, 24(1-2), 3–16.
31.
LevineC. (Ed.). (1993). Orphans of the HIV epidemic.New York: United Hospital Fund.
32.
LevineC. (1995). In whose care and custody? Orphans of the HIV epidemic. AIDS Clinical Care, 7(10), 83.
LinskN., & BonkN. (2000). Adherence to treatment as social work challenges. In LynchV. (Ed). HIV/AIDS at year 2000: A sourcebook for social workers, (pp. 211–227). Boston: Allyn & Bacon.
35.
LuescherK., & PillemerK. (1998). Intergenerational ambivalence: A new approach to the study of parent–child relations in later life. Journal of Marriage and the Family, 60(2), 413–425.
36.
MarksN. F. (1996). Caregiving across the lifespan: National prevalence and predictors. Family Relations, 45(1), 27–36.
37.
MasonS., & LinskN. (2000). Relative caregivers as foster parents of HIV-affected children. Unpublished manuscript.
38.
McKinlayJ. B., SkinnerK., RileyJ. W., & ZablotskyD. (1993). On the relevance of social science concepts and perspectives. In RileyM. W., OryM. G., & ZablotskyD. (Eds.), AIDS in an aging society.New York: Springer.
39.
McKnightJ. L., & KretzmannJ. (1991). Mapping community capacity, Building community capacity (a Research and Policy Report) Center for Urban Affairs and Policy Research, Northwestern University.
40.
MilesM. B., & HubermanA. M. (1994). Qualitative data analysis (2nd ed.).Newbury Park, CA: Sage.
41.
MinklerM., RoeK. M., & PriceM. (1992). The physical and emotional health of grandmothers raising grandchildren in the crack cocaine epidemic. The Gerontologist, 32(6), 351–358.
42.
MishlerE. G. (1986). Research interviewing: Context and narrative.Cambridge, MA: Harvard University Press.
43.
MurphyB. C., & DillonC. (1998). Interviewing in action.Pacific Grove, CA: Brooks/Cole.
44.
NiebuhrS., & RoyseJ. (1989). Take care!St. Paul, MN: Wilder Foundation.
45.
OguC., & WolfeL. R. (1994). Midlife and older women and HIV/AIDS.Washington, DC: American Association of Retired Persons.
46.
PattonM. Q. (1990). Qualitative evaluation and research methods.Newbury Park, CA: Sage.
47.
PerreaultM., ReidyM., TaggartM. E., RichardL., & SavardN. (1992). Needs assessment of natural caregivers of people with HIV or AIDS. International Conference on AIDS. July 19–24; 8(2): B159 (abstract no. PoB 3436).
48.
PoindexterC., & LinskN. (1998). The sources of social support for a sample of HIV-affected older minority caregivers. Families in Society, 79, 491–503.
49.
PoindexterC., & LinskN. (1999a). HIV-related stigma in a sample of HIV-affected older African-American caregivers. Social Work, 44(1), 46–61.
50.
PoindexterC., & LinskN. (1999b). “I'm just glad that I'm here”: Stories of seven African-American HIV-affected grandmothers. Journal of Gerontological Social Work, 32(1), 63–81.
51.
ReidyM., TaggartM. E., AsselinL. (1991). Psychosocial needs expressed by the natural caregivers of HIV infected children. AIDS Care, 3(3), 331–343.
52.
RiessmanC. K. (1993). Narrative Analysis.Newbury Park, CA: Sage.
53.
SaleebeyD. (1996). The strengths perspective in social work practice: Extensions and cautions. Social Work, 41(3), 296–305.
54.
SolomonK. (1996). Psychosocial issues. In NokesK. M. (Ed.). HIV/AIDS and the older adult.Washington, DC: Taylor & Francis.
55.
StoneR., CafferataG. L., & SanglJ. (1987). Caregivers of the frail elderly: A national profile. The Gerontologist, 27(5), 616–626.
56.
StraussA., & CorbinJ. (1990). Basics of qualitative research.Newbury Park, CA: Sage.
57.
Taylor-BrownS., & WienerL. (2000). Parents and their children: Planning in the face of uncertainty. In LynchV. (Ed.). HIV/AIDS at year 2000: A sourcebook for social workers, (pp. 66–78). Boston: Allyn & Bacon.
58.
TurnerH. A., & PearlinL. I. (1989). Issues of age, stress, & caregiving: Informal supports of persons with AIDS. Generations, 13, 56–59.
59.
WalkerA. J.; PrattC. C.; EddyL. (1995). Informal caregiving to aging family members: A critical review. Family Relations, 44(4), 402–411.
60.
WheelerD., & ShernoffM. (1999). The role of mental health professionals in medical decision making regarding protease inhibitors. In ShernoffM. (Ed.) AIDS and mental health practice: Clinical and policy issues, (pp. 3–18). New York: Haworth.
61.
WienerL. (1998). Counseling Parents and Children with HIV. In Aronstein, David M. & Thompson, Bruce J., HIV and Social Work: A Practitioner's Guide, (pp. 315–326). New York: Haworth.
