Ageing with HIV in Victoria: findings from a qualitative studyadmin
Ageing with HIV in Victoria: findings from a qualitative study
HIV Australia | Vol. 11 No. 2 | July 2013
KARALYN MCDONALD, JULIAN ELLIOTT and LISE SAUGERES report on key study findings exploring the impacts of ageing and chronic disease on people with HIV.
The average age of people living with HIV in Australia is increasing due to improved survival and increasing age at time of diagnosis.1
At the end of 2008, an estimated 17,444 people were living with HIV in Australia.2
Modelling estimates and national surveys indicate the average age of Australians living with HIV is now over 45 years and the number of people aged over 60 years has been increasing at 12% per year since 1995.3 4 5
In Australia, the proportion of people with HIV over the age of 55 years is estimated to have increased from 2.7% in 1985 to 11.2% in 2000 and 25.7% in 2010, with a projected further increase to 44.3% by 2020.6
The Positive Ageing Project, funded by the Department of Health, Victoria, aims to explore the impacts of ageing and increased burden of chronic disease on people living with HIV and investigate social, welfare and health system approaches to improve experiences of ageing in this population.
This paper reports on the findings from the qualitative study and will contribute to the second phase of the project which will develop a pilot program in response to the findings of Phase 1.
Thirty semi-structured interviews were conducted in 2012 with people living with HIV aged 45 and over.
Eight family members/carers were also interviewed, three as part of the interview with the person living with HIV, and four in separate interviews (for the sake of brevity, this article will only report on the findings of the interviews with people living with HIV).
We sought to recruit a higher number of participants with a significant number of co-morbidities in order to understand their experiences of HIV, ageing and living with the burden of other illnesses, as well as a smaller number of people with fewer co-morbidities.
We also sought to find people from a variety of socioeconomic backgrounds, and people who lived in both inner and outer suburbs as well as in regional areas.
During the interview, participants were asked about key current life issues – regarding HIV and general health, child rearing (if applicable), relationships, employment, housing, finances, social connectedness, use of HIV and mainstream services, ageing with HIV and directions for the future.
Interviews lasted approximately one hour and were transcribed verbatim and thematically analysed.
Ethics approval was received from Monash University, Alfred Hospital and the Victorian AIDS Council/Gay Men’s Health Centre.
Twenty-five men and five women living with HIV were interviewed.
Of the 25 men, 18 described their sexual orientation as homosexual/gay, one as bisexual, and six as straight. Four of the women described their sexual orientation as straight and one as bisexual.
The participants were aged between 46 and 82 years old.
The majority of the interviewees received the Disability Support Pension (DSP) or the Age Pension. Only five people were in paid work, four were self-employed and one was employed part-time. Twenty-one people living with HIV earned a salary of less than $25,000 per annum.
Twelve people owned their house or were paying mortgages, ten lived in public housing and three in supported accommodation.
Only three gay and four straight men had a life partner, though one straight man was separated but still living with his ex-wife and children on a part-time basis. None of the women interviewed were currently partnered.
Slightly more than half of the participants were diagnosed with HIV during the 1980s. Of the six diagnosed in the last 12 years, the most recent diagnosis was 17 months prior to the interview.
All were currently taking antiretroviral therapy (ART).
The majority of participants had difficulties in managing multiple health conditions including major physical illnesses and depression.
Factors such as physical pain, having to be hospitalised, feelings of loss and grief for friends and partners who had died of AIDS, feelings of having lost control of their lives, and worrying about the future all contributed to depression.
While these illnesses and conditions had varying degrees of impact on people’s lives, they had impacted negatively on their quality of life and their identity.
Fatigue and exhaustion were common themes, significantly affecting quality of life:
At the moment it is almost daily exhaustion from the time I get up ‘til 1.00 or 2.00 in the afternoon. I get up about 9.00, have breakfast and after that I just can barely keep my eyes open …
because I feel ill so often and … things just don’t get done …
by the time I take care of whatever normal chores I can, there is no time left. I also find that my, my thinking isn’t as clear as it used to be. [My] decisionmaking skills have taken a dive, as have [my] organisational skills.
— Bart, 53, gay, diagnosed mid-1980s.
Depression was also a significant health issue for our participants. More than half of the people interviewed suffered from clinically diagnosed depression.
There was a significant burden of grief for those who had lost so many friends to AIDS. The loss was also personal, how it impacted on lives not lived as they were intended and the impact it had on loved ones.
… you have got to learn to do the stuff around grief, loss, not being able to work, not being able to provide for your family, not being able to care for your children in the way that you would expect to care for them.
You were going to have to die well before your children were grown up, you know. There is all that stuff in relation to family that gets taken away from you.
— Justin, 56, straight, diagnosed 1996.
What is normal ageing anyway?
A number of participants also felt they lacked information about HIV and ageing. Many participants were aware of the discourse of ‘accelerated ageing’ and felt confused about what was normal ageing and what was attributable to HIV. Participants were also concerned about whether HIV would have an impact on their cognitive function:
… the fear of … the unknown, you’re not going to know if it’s shortened your life span or not, you don’t know, just living with the uncertainty of the medication that you’re taking, whether it’s going to work? What side-effects you can cope with?
Then by taking copious amount of pills, but then they start to backfire, you think well am I taking too many?
Yeah, a wastage to your body on, I know I’ve been experiencing a lot of bladder problems, whether that’s from old age or it’s just wastage of the muscles?
You fear there are some horrendous side effects with women – you can tell by the stomach that I have is caused from the pills, it’s called lipodystrophy.
You fear what the diabetes is going to do to me, and I’m probably bordering on insulin, but I just really don’t want to be sticking needles in myself, but I can see that down the track it most likely will be an option.
So it’s just trying to keep on top of your own physical health, and knowing whether it’s old age or it’s going to kill you or not, you know, the fear that a lot of these things can cause early dementia, so yeah.
— Penelope, 77, diagnosed 2002.
A number of participants indicated that they did not feel they had enough information about the experience of ageing and living with HIV.
They were aware that they were the first cohort of people to age with HIV and felt there needed to be more services and information that targeted their experiences:
… there is also the stuff about how you cope with the ongoing day-today stuff of ageing, getting older in a nursing home, how you cope with that
… what services that are available for people, where you go to, what the quality of the care is and all that sort of stuff.
… there is not enough information out there about how you get those services because the services aren’t in place yet
… like if I had to go to somewhere for care now I would go to somewhere where there would be issues around my HIV. There would be issues around me getting older for me, my mental health.
My mental health would be a big management issue. And that’s very common. And do they have the services in place to cope with that? I am not sure.
— Justin, 56, straight, diagnosed 1996.
Losing independence and residential care
Participants who had already experienced major illnesses or co-morbidities worried about becoming increasingly debilitated as they age.
A related concern was not having anybody to care for them in their own homes and losing their independence:
I don’t know that I’d have support if I lost my independence. That’s the worry; you can’t expect neighbours to look after you.
My brother who is now 76 has lymphoma and … he’s really quite ill, I know I’m not going to be able to rely on him, … my dearest friend, …[is] dealing with his own health issues, so I really don’t have [anyone].
So that always scares me, once I lose my mobility or my independence, what I would do, and that scares me.
— Bruno, 71, gay, diagnosed 1988.
A prominent theme in the interviews was the fear of having to live in mainstream nursing homes where they would not be used to caring for people with HIV and where they experience discrimination because of their HIV status and/or sexual identity:
…elderly gay men would not be comfortable living in a normal nursing home. It’s not pleasant for anybody, but I think you’d run into… a lot of difficulties with it.
— Parker, 47, gay, diagnosed 1983.
I know of cases where people have gone into homes … but have had to go back in the closet.
Fancy … at 70, because older people can be just as bad, and they’re going into these homes and not being able to let people know they’re gay, let alone HIV, and I think oh, that’s back to the 50s.
— Bruno, 71, gay, diagnosed 1988.
Many of our participants also experienced social isolation and loneliness. This was often due to the loss of friends and networks, either through death or increasing illness where participants were no longer able to participate as fully, or where participants were financially unable to participate in their social networks.
Stigma and experiences of rejection often prevented people from seeking new friendships or networks.
Similarly, many participants avoided intimate relationships due to the perceived difficulties in negotiating sexual relationships, including the fear of infecting a partner and the fear of rejection from a potential partner.
Having major illnesses or disability, both in terms of body image and feelings of loss for the life they had previously, as well feelings of shame and guilt for having contracted HIV, all contributed to feelings of low self-esteem:
And it’s very hard to make new friends, you know, to replace them. Especially if you are HIV and if you are on a pension, because you know people say oh well come out we will be going out for dinner, etc.
And then you find yourself having to pay part of an expensive bill and then you have got to think oh shit I shouldn’t have done that.
— Ralph, 61, gay, diagnosed 1992.
However, people used a variety of strategies in order to cope with HIV and other illnesses or conditions. For some, being actively involved within the HIV sector, or using HIV services and attending HIV-related social events was a way of finding support, a sense of community and purpose.
Others found this through non HIV-related organisations.
Resisting the emphasis of HIV in their lives as well as participating in activities outside of HIV organisations and looking for different sources of support were all strategies that people used in order to cope with their situation and improve their quality of life.
Several participants also took the approach of making positive changes to their lifestyle in order to try to improve their health:
I need to maintain a good level of physical fitness, and mental alertness, and I think exercise is probably as good a thing as any.
I go for a walk, even if it’s just along the front of the building two or three times, and when I came out of hospital the other day one of the things I did was walk around the block at night, just to make sure that I could actually do that
… I keep a fairly close eye on what I eat, I eat [healthily], … I don’t eat a lot of sweets, I don’t smoke, I think the last time I had a glass of wine was about three weeks ago.
— Richard, 64, diagnosed 2001, who was recovering from cancer.
Many of our participants were living with complex co-morbidities that required a great deal of medical and self-management and often had a negative impact on their quality of life.
Many participants were unclear about how much of an impact HIV had on the ageing process and most felt they did not have enough information about this.
Participants felt trepidation towards the future and uncertainty of how the combination of ageing and HIV would further impact their lives and their ability to remain independent.
The fear of ending up in mainstream nursing homes, where they may not receive adequate treatment and may be stigmatised or discriminated against because of their sexuality and/or HIV status, was also very prominent for those who did not have any family members or other people to care for them should they became very ill and lose their mobility.
Social isolation and loneliness was also prominent among many of our participants. Some participants were no longer physically able to participate in activities that may reduce their social isolation and some were unwilling to enter new relationships – whether they be social or intimate – for fear of rejection after disclosing their HIV status.
Limited financial resources also prevented some participants from engaging with friends and social networks.
However, a number of participants demonstrated great resilience and coping strategies in living long-term with HIV and ageing.
Being actively involved in community groups and social activities, resisting the emphasis of HIV in their lives as well as making positive changes to their lifestyle were all successful strategies utilised by the people ageing with HIV in the study.
We would like to acknowledge our funders, the Department of Health, Victoria, the members of the Positive Ageing Steering Committee, the following individuals and organisations who assisted us with recruitment, James McMahon, Janine Roney, Karen Blyth, Julie Silvers, John Hall, Tania Phillips, Olga Vujovic, Rebecca Matheson, David Menadue, Ian Wooley, Kate Cherry, Melbourne Sexual Health, Positive Women, Straight Arrows, The Victorian AIDS Council and the Positive Living Centre, and the Alfred Hospital.
Finally we thank the 30 people living with HIV and their eight carers who so generously shared their experiences with us.
1 National Centre in HIV Epidemiology and Clinical Research (NCHECR). (2009). HIV/AIDS, viral hepatitis and sexually transmissible infections in Australia: Annual Surveillance Report, 2009, NCHECR, University of New South Wales, Sydney.
2 Commonwealth of Australia. (2010). Sixth National HIV Strategy: 2010–2013. Commonwealth Department of Health and Ageing, Canberra.
3 Murray, J., McDonald, A., Law, M.(2009). Rapidly ageing HIV epidemic among men who have sex with men in Australia. Sexual Health, 6, 83–86.
4 Grierson, J., Power, J., Pitts, M., Croy, S., Clement, T., Thorpe, R., et al. (2009). HIV Futures Six: Making Positive Lives Count. Australian Research Centre in Sex, Health and Society, La Trobe University, Melbourne.
5 Grierson, J., Bartos, M., deVisser, R., McDonald, K. (2000). HIV Futures II: The Health and Well-being of People with HIV/AIDS in Australia, 2000, The Australian Research centre in Sex, Health and Society, Latrobe University, Melbourne.
6 Jansson, J., Wilson, D., Watson, J. (2011). Mapping HIV outcomes: geographical and clinical forecasts of numbers of people living with HIV in Australia. National Association of People living with HIV/AIDS, National Centre in HIV Epidemiology and Clinical Research, University of New South Wales, Sydney.
Dr Karalyn McDonald is a Research Fellow at the Department of Infectious Diseases, Monash University and an Honorary Fellow at the Australian Research Centre for Sex, Health and Society, La Trobe University.
Dr Julian Elliott is Head of the Clinical Research Team at the Department of Infectious Diseases, Monash University, Head of Clinical Research at the Alfred Hospital Infectious Diseases Unit and HIV Clinical Advisor, Centre for Population Health, Burnet Institute.
Dr Lise Saugeres was a Research Fellow at the Department of Infectious Diseases, Monash University in 2012. She conducted the interviews for this study and was the lead author for the report Ageing with HIV in Victoria: A Qualitative Study.