Eight African American women were interviewed to better understand their experiences providing care for relatives who were living with HIV/AIDS. Individual interviews and a focus group discussion took place, investigating the following issues: disclosure, caregiver stress and coping, and support. They were also asked to give advice to other caregivers. These women's lives were marked by stress and change, and they used a variety of strategies to cope in their AIDS caregiving role. They experienced a range of emotions because of the new responsibilities that accompanied the resumption of the caregiving role that many thought they had completed. However, they all willingly took on the challenge. They expressed having a strong sense of spiritual faith, and several felt empowered to become active in the fight against HIV/AIDS. The need for adequate support systems, both formal and informal, was a unanimous concern. The findings of this exploratory study are discussed in terms of the support needs of African American female AIDS caregivers, the possible influence of culture and societal values, and the implications for future research and program development.
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References
1.
AkbarN. (1991). The evolution of human psychology for African Americans. In JonesR. (Ed.), Black psychology. Third Edition. Berkeley, CA: Cobb & Henry.
2.
BakerS., SuditM., & LitwakE. (May–June, 1998). Caregiver burden and coping strategies used by informal caregivers of minority women living with HIV/AIDS. ABNF Journal, 56–60.
3.
BiegelD.E., SalesE., & SchulzR. (1991). Family caregiving in chronic illness: Alzheimer's disease, cancer, heart disease, mental illness, and stroke.Newbury Park, CA: Sage.
4.
Boyd-FranklinN., AlemanJ. C., Jean-GillesM. M., & LewisS. Y. (1995). Cultural sensitvity and competence: African-American, Latino and Haitian families with HIV/AIDS. In Children, families and HIV/AIDS.Boyd-FranklinN., SteinerG. L., & BolanM. G. (Eds.). New York: Guilford Press, 53–77.
5.
BoyleJ. S., FerrellJ. A., HodinckiD. R., & MullerR. B. (1997). Going home: African-American caregiving for adult children with human immunodefiency virus disease. Holistic Nursing Practice, 11, 27–35.
6.
BrennanP. F., & MooreS. M. (1994). Caregivers of persons living with AIDS. In KahanaE., BiegelD., & WykieM. (Eds.). Family caregiving across the lifespan.Newbury Park, CA: Sage.
7.
BrownD. R. (1997). Cultural mistrust among African-Americans: Results from Cancer Awareness & Behavior Survey.Detroit, MI: Center for Urban Studies, Wayne State University.
8.
BrownD. R., & SankarA. (1998). HIV/AIDS and aging minority populations. Research on Aging, 20, 865–885.
9.
BrownM.A. (1994). Family caregiving in HIV infection: Current knowledge development and a vision for the future.American Academy of Nursing, HIV/AIDS Nursing Care Summit Proceedings, Washington, DC.
10.
BrownM. A., & Powell-CopeG. M. (1991). AIDS family care-giving: Transitions through uncertainty. Nursing Research, 40, 338–345.
11.
CrawfordA. M. (1996). Stigma associated with AIDS: A meta-analysis. Journal of Applied Social Psychology, 26, 398–416.
12.
DuhS. (1991). Blacks and AIDS.Newbury Park, CA: Sage.
13.
FlaskerudJ. H., & TaboraB. (1998). Health problems of low-income female caregivers of adults with HIV/AIDS. Health Care for Women International, 19, 23–36.
14.
FolkmanS., ChesneyM. A., & Christopher-RichardsA. (1994). Stress and coping in caregiving partners of men with AIDS. Psychiatric Clinics of North America, 17, 35–53.
15.
HacklK. L., SomlaiA. M., KellyJ. A., & KalichmanS. C. (1997). Women living with HIV/AIDS: The dual challenge of being a patient and caregiver. Health & Social Work, 22, 53–62.
16.
Kubler-RossE. (1987). AIDS: the ultimate challenge.New York: Macmillan.
17.
McCannK., & WadsworthE. (1992). The role of informal carers in supporting gay men who have HIV related illness: what do they do and what are their needs?AIDS Care, 4, 25–34.
18.
MindelC. H., & WrightR. (1982). The use of social services by Black and White elderly: The role of social support systems. Journal of Gerontological Social Work, 3(3–4), 107–125.
19.
MuiA. C. (1992). Caregiver strain among Black and White daughter caregivers: A role theory perspective. The Gerontologist, 32, 203–212.
20.
MullanJ.T. (1998). Aging and informal caregiving to people with HIV/AIDS. Research on Aging, 20, 712–738.
21.
MyersL. J. (1991). Expanding the psychology of knowledge optimally: The importance of world view revisited. In JonesR. (Ed.). Black psychology, (3rd ed.). Berkeley, CA: Cobb & Henry, 15–32.
22.
NoblesW. W. (1991). African philosophy: Foundations of Black psychology. In JonesR. (Ed.). Black psychology: Third Edition.Berkeley, CA: Cobb & Henry Publishers, 47–65.
23.
PattonM. Q. (1990). Qualitative evaluation and reserarch methods.Newbury Park: Sage.
24.
PearlinL. I., AneshenselC. S., & LeBlancA. J. (1997). The forms and mechanisms of stress proliferation: The case of AIDS caregivers. Journal of Health & Social Behavior, 38, 223–236.
25.
PearlinL. I., & MullanJ. (1994). The structure of functions of AIDS caregiving relationships. Psychosocial Rehabilitation Journal, 17(4), 51–68.
26.
PoindexterC. C., & LinskN. L. (1999). HIV-related stigma in a sample of HIV-affected older female African American caregivers. Social Work, 44, 46–61.
27.
PoindexterC. C., & LinskN. L. (1998). Sources of support in a sample of HIV-affected older minority caregivers. Families in Society, 79, 497–503.
28.
Powell-Cope, & BrownM. A. (1992). Going public as an AIDS family caregiver. Social Science and Medicine, 34, 571–580.
29.
RaveisV., & SiegelK. (1991, February). Impact of caregiving on informal or familial caregivers. AIDS Patient Care, 39–43.
30.
ReynoldN. R., & AlonzoA. A. (1998). HIV informal caregiving: Emergent conflict and growth. Research in Nursing & Health, 21, 251–260.
31.
RinelleV. J., & DubinW. R. (1988). The hidden victims of AIDS: Healthcare workers and families. Psychiatric Hospital, 19, 115–120.
32.
Rodgers-RoseL. E. (1980). The Black woman: A historical overview. In Rodgers-RoseL. F. (Ed.). The Black woman.Beverly Hill, CA: Sage.
33.
Rodrigues-TriasH., & MarteC. (1995). Challenges and possibilities: Women, HIV and the health care system in the 1990's. In SchneiderB. E., & StollerN. E.Women resisting AIDS.Philadelphia, PA: Temple University Press, 301–322.
34.
RutmanD. (1996). Caregiving as women's work: Women's experiences of powerfulness and powerlessness as caregivers. Qualitative Health Research, 6, 90–112.
35.
SchillerN.G. (1993). The invisible women: caregiving and the construction of AIDS health services. Culture, Medicine, and Psychiatry, 17, 487–512.
36.
TriceA.D. (1988). Posttraumatic stress syndrome-like symptoms among AIDS caregivers. Psychological Reports, 63, 656–658.
37.
TurnerH., & CataniaJ. (1997). Informal caregiving to persons with AIDS in the United States: Caregiver burden among central cities residents eighteen to forty-nine years old. American Journal of Community Psychology.25, 35–59.
38.
TurnerH., CataniaJ.A., & GagnonJ. (1994). The prevalence of informal caregiver to persons with AIDS in the United States: Caregiver characteristics and their implications. Social Science and Medicine, 38, 1548–1552.
39.
WardlawL. (1994). Sustaining informal caregivers for persons with AIDS. Families in Society, 75, 373–384.
40.
WykleM., & SegalM. (1989). A comparison of Black and White family caregivers experience with dementia. Journal of the National Black Nurses Association, 29–41.
