This thesis explored gay male carers experience of caring for their partner, brother or friend who had HIV/AIDS. Through using phenomenological methodology (van Manen, 1990), the day-to-day caring experiences were uncovered. The data gathered were then analysed through a nursing lens, with the concept of stigma as an anchoring point. The dual stigmas of homophobia and AIDS phobia impacted on the daily lives of these men as they cared for their loved one. The research identified six themes. These were: 1) the relationship; 2) coping with HIV and AIDS; 3) the corporal impact of HIV/AIDS; 4) experiences of carers including the absence of others; 5) living daily with the virus: Demands of people living with HIV/AIDS (PLWHA); and 6) saying goodbye, but wanting to keep the memory alive.
The caring these men undertook, for which they were frequently unprepared, was intensive and complex, but because of their commitment and love they battled on. Because of a sense of shame associated with AIDS phobia on the part of the PLWHA, the carer often had to undertake this care in isolation, without support from family, friends or home health care agencies.
The carers struggled with not only the demands of day-to-day care, but also with non-acceptance from family, both of the nature of the relationship with their partner and of their homosexuality. Family members were forced, often with great difficulty, to acknowledge the close commitment the men had to each other. Recognition that one had a terminal disease, HIV/AIDS was also required. The fear of potential transmission was high among carers, friends and family members. Notably, there was an absence of blame on the part of the carer towards his partner for contracting HIV/AIDS.
The physical decline and marking of the body further stigmatised the PLWHA, which added to carers burdens. They endeavoured to minimise the physical decline in their partner, so he could continue to pass as healthy, and attempted to make the day-to-day living as normal as possible. The methods of combating weight loss and opportunistic infections meant frequent medical appointments, complex intensive medical procedures and help with personal care, which was undertaken at home largely without support from health care staff. Carers frequently struggled also with their partners denial of being ill.
One strategy all carers used was to escape with their partners from their everyday life in Melbourne and attempt metaphorically to leave the HIV/AIDS behind; this was a time when they could rekindle their life together as it was before HIV/AIDS came into their lives. Some carers chose to holiday without their partner, to give themselves a break from the day-to-day caring, while others planned and took holidays with their partner. The decline of the health in the PLWHA meant that family members had to recognise and accept both the nature of the relationship and the presence of the disease. This recognition and acceptance often came only when the partner was very ill, even at the point of dying.
Carers and their partners discussed the potential use of euthanasia, as a means of ending the final phase of life with some dignity. One carer and his partner used euthanasia, despite its illegal status. The main concern for all carers was providing comfort and a reduction in the pain associated with HIV/AIDS for the partner.
The widespread grief associated with HIV/AIDS was evident amongst these carers. All had known other gay men who had died, some carers own partner had died, or was about to die. There was an overwhelming sense of grief, which at times was repressed as a means of coping day-to-day. All carers felt it was important and necessary to remember those lost to HIV/AIDS through the various public memorials, as they did not want their partner to be just another faceless person lost to this disease.
This phenomenological study of carers experience highlights the need for health care workers to be aware of the differing strategies that gay men use to cope with HIV/AIDS. While it may seem that the carers are coping with care of their partner, the outer façade is not always an accurate portrayal of the true situation. Health care workers should enquire as to the assistance these carers need from health care services in order to continue to care for their loved one. Such assistance can be the simple recognition of the partner and acceptance of them as part of the PLWHAs network; this inclusion and acceptance is half the battle.
| Identifer | oai:union.ndltd.org:ADTP/216903 |
| Date | January 2002 |
| Creators | Munro, Ian, ilmunro@deakin.edu.au |
| Publisher | Deakin University. Public Health and Nutrition |
| Source Sets | Australiasian Digital Theses Program |
| Language | English |
| Detected Language | English |
| Rights | http://www.deakin.edu.au/disclaimer.html), Copyright Ian Munro |
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