Objective: The notion of caregiver ‘burden’ has been used as a term that refers to the financial, physical and emotional effects of caring. This Australian 2002 research investigated the caregiver burden of HIV/AIDS on the gay male carers of gay men with the disease. Methods: This study was a phenomenological inquiry and employed van Manen’s approach to content analysis. Data saturation occurred at twelve participants. Results: The findings produced carer themes relating to coping with the burden of care of a person living with HIV/AIDS (PLWHA) in the context of living day-to-day with HIV/AIDS, coping with the last phase of AIDS toward death, saying goodbye and remembrance. Conclusion: Allocating resources to gay male carers such as; education, respite care, family therapy and cognitive-behavioral therapy (CBT) to address grief and stigma issues, has implications for how health services might reduce the burden of care for these carers.
Addington-Hall, J., & Karlsen, S. ( 2000). Do home deaths increase distress in bereavement? Palliative Medicine, 14, 161-162.
2.
Aoun, S.M., Kristjanson, L.J., Currow, D.C., & Hudson, P.L. ( 2005). Caregiving for the terminally ill: At what cost? Palliative Medicine, 19, 551-555.
3.
Aranda, S., & Peerson, A. ( 2001). Caregiving in advanced cancer: Lay decision making. Journal of Palliative Care, 17, 270-276.
4.
Ariss, R.M. ( 1997). Against death: The practice of living with AIDS. Amsterdam: Gordon & Breach Publishers.
5.
Barbour, R.S. ( 1994). The impact of working with people with HIV/AIDS: A review of the literature. Social Science Medicine, 38, 221-232.
6.
Barker, N. ( 2006). Sex and the civil partnership act: The future of (non)conjugality ? Feminist Legal Studies, 14, 241-259.
7.
Brown, M.A., & Powell-Cope, G.M. (1991). AIDS family caregiving: Transition through uncertainty. Nursing Research, 40, 338-345.
8.
Brown, M.A., & Powell-Cope, G.M. (1993). Themes of loss and dying in caring for a family member with AIDS. Research in Nursing and Health, 16, 179-191.
9.
Chan, K.Y., Stoova, M.A., Sringernyuang, L., & Reidpath, D.D. (2008). Stigmatization of AIDS Patients: Disentangling Thai nursing students’ attitudes towards HIV/AIDS, drug use, and commercial sex. AIDS And Behavior, 12, 146-157.
10.
Clayton, J.M., Butow, P.N., Arnold, R.M., & Tattersall, M.H.N. (2005). Discussing end-of-life issues with terminally ill cancer patients and their carers: A qualitative study. Supportive Care in Cancer: Official Journal of the Multinational Association of Supportive Care in Cancer, 13, 589-599.
11.
Currow, D., & Hegarty, M. ( 2006). Suffering-At the bedside of the dying. Journal of Religion , Spirituality and Aging, 18(2), 123-136.
12.
Dowsett, G.W. ( 1996). Practicing desire: Homosexual sex in the era of AIDS . Stanford, CA: Stanford University Press.
13.
Ezzy, D. ( 2002). Qualitative analysis : Practice and innovation. Crows Nest, New South Wales, Australia: Allen & Unwin.
14.
Fajer, M.A. ( 1992). Can two real men eat quiche together? Storytelling, gender-role stereotypes, and legal protection for lesbian and gay men. University of Miami Law Review, 46, 511-651.
15.
Faugier, J. ( 1990). Revealing hidden fears. Nursing Times , 86(11), 66-68.
16.
Folkman, S., Chesney, M.A., & Christopher-Richards, A. (1994). Stress and coping in caregiving partners of men with AIDS. Psychiatric Manifestations of HIV Disease, 17(1), 35-53.
17.
Frost, D.M., Parsons, J.T., & Nanin, J.E. ( 2007). Stigma, concealment and symptoms of depression as explanations for sexually transmitted infections among gay men. Journal of Health Psychology, 12, 636-640.
18.
Gregory, D., & Longman, A. ( 1992). Mothers’ suffering: Sons who died of AIDS. Qualitative Health Research, 2, 334-357.
19.
Guba, E., & Lincoln, Y. ( 1985). Naturalistic inquiry. Beverley Hills, CA: Sage.
20.
Hagerty, B., Lynch-Sauer, J., Patusky, K.L., & Bouwsema, M. ( 1993). An emerging theory of human relatedness. Journal of Nursing Scholarship, 25, 291-296.
21.
Hanson, B. ( 1996). The violence we face as lesbians and gay men: The landscape both outside and inside our communities. Journal of Gay and Lesbian Social Services, 4(2), 95-113.
22.
Hodgson, I. ( 1999). Clinical HIV and combination therapy: Meeting the challenge of a new era. British Journal of Nursing, 8(1), 39-43.
23.
Hudson, P., Aranda, S., & Kristjanson, L. (2004). Meeting the supportive needs of family caregivers in palliative care: Challenges for health professionals . Journal of Palliative Medicine, 7, 19-25.
24.
Hudson, P., Hayman-White, K., Aranda, S., & Kristjanson, L.J. (2006). Predicting family caregiver psychosocial functioning in palliative care. Journal of Palliative Care, 22(3), 133-140.
25.
Kassaye, S.G., & Katzenstein, D. (2003). HIV/AIDS care and treatment in sub-Saharan Africa. AIDS Rev, 5, 195-204.
26.
Kim, H.S., & Kollak, I. ( 2005). Nursing theories: Conceptual and philosophical foundations (2nd ed.). New York: Springer.
27.
Kuruppuarachchi, K.A.L.A., & Lawrence, T.S. (2006). Carer burden in dementia . The Ceylon Medical Journal, 51(1), 44-44.
28.
Land, H., & Harangody, G. ( 1990). A support group for partners of persons with AIDS. Families in society: The Journal of Contemporary Human Services, 71, 471-481.
29.
Leininger, M. ( 2002). Culture care theory: A major contribution to advance transcultural nursing and practices. Journal of Transcultural Nursing, 13, 189-192.
30.
Lewis, R.J., Derlega, V.J., Griffin, J.L., & Krowinski, A.C. (2003). Stressors for gay men and lesbians: Life stress, gay-related stress, stigma consciousness, and depressive symptoms. Journal of Social and Clinical Psychology, 22, 716-729.
31.
LoGiudice, D., & Hassett, A. ( 2005). Uncommon dementia and the carer’s perspective. International Psychogeriatrics, 17(Suppl. 1), S223-S231.
32.
Ma, W., Detels, R., Feng, Y., Wu, Z., Shen, L., Li, Y., et al. (2007). Acceptance of and barriers to voluntary HIV counselling and testing among adults in Guizhou province, China. AIDS (London, England), 21(Suppl. 8), S129-S135.
33.
Maj, M. ( 1991). Psychological problems of families and health workers dealing with people infected with human immunodeficiency virus. Acta Pscyhiatrica Scandinvica, 83, 161-168.
34.
Martin, J.L., & Dean, L. ( 1993). Effects of AIDS-related bereavement and HIV-related illness on psychological distress among gay men: A seven-year longitudinal study, 1985-1991. Journal of Consulting and Clinical Psychology, 61(1), 94-103.
35.
McCann, K., & Wadsorth, E. ( 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(1), 25-34.
36.
Morse, J.M. ( 1994). Designing funded qualitative research. In N. K. Denzin & Y. S. Lincoln (Eds.), Qualitative research (pp. 220-235). Thousand Oaks, CA: Sage.
37.
Munro, I. ( 2002). The lived experience of gay men caring for others with HIV/AIDS : Living, loving and dying in the era of HIV/AIDS. Unpublished PhD thesis submitted to Deakin University, Melbourne, Australia.
38.
Nardi, P.M. ( 1997). Friends, lovers and families: The impact of AIDS on gay and lesbian relationships. In M. P. Levine , P. M. Nardi, & J. M. Gagnon (Eds.), In changing times: Gay men and lesbians encounter HIV/AIDS. Chicago: The University of Chicago Press.
39.
National Centre in HIV Epidemiology and Clinical Research. ( 2007). Australian HIV Surveillance Report. Retrieved August 13, 2007, from http://www.nchecr.unsw.edu.au/NCHECRweb.nsf/page/Quarterly%20Surveillance%20Reports
40.
Pakenham, K.I., Dadds, M.R., & Terry, D.J. ( 1995). Carers’ burden and adjustment to HIV. AIDS Care, 7, 189-203.
41.
Pisal, H., Sutar, S., Sastry, J., Kapadia-Kundu, N., Joshi, A., Joshi, M., et al. (2007). Nurses’ health education program in India increases HIV knowledge and reduces fear. Journal of the Association of Nurses in AIDS Care, 18(6), 32-43.
42.
Preston, D.B., D’Augelli, A.R. , Kassab, C.D., & Starks , M.T. (2007). The relationship of stigma to the sexual risk behavior of rural men who have sex with men. AIDS Education and Prevention, 19, 218-230.
43.
Terry, W., Olson, L.G., Wilss, L., & Boulton-Lewis, G. (2006). Experience of dying: Concerns of dying patients and of carers. Internal Medicine Journal, 36, 338-346.
van Manen, M. ( 1990). Researching lived experience: Human science for an action sensitive pedagogy. London: The Althouse Press.
46.
Walsh, K., Jones, L., Tookman, A., Mason, C., McLoughlin, J., Blizard, R., et al. (2007). Reducing emotional distress in people caring for patients receiving specialist palliative care. Randomised trial. The British Journal of Psychiatry: The Journal of Mental Science, 190, 142-147.
47.
Watson, J. ( 1979). Nursing: The philosophy and science of caring. Boulder: University Press of Colorado.
48.
Watson, J. ( 1988). Nursing: Human science and human care. A theory of nursing . New York: National league for Nursing.
49.
Woods, B. ( 1999). Promoting well-being and independence for people with dementia. International Journal Geriatric Psychiatry, 14(97-109).
50.
Wooff, D., Schneider, J., Carpenter, J., & Brandon, T. ( 2003). Correlates of stress in carers. Journal of Mental Health, 12(1), 29-40.
51.
Zerwekh, J.V. ( 2006). Nursing care at the end of life : Palliative care for patients and families. Philadelphia, PA: F.A. Davis Co.
