People living with HIV considering transition to aged care - an emerging phenomenon

People living with HIV (PLHIV) are an ageing population. In 2017 those aged 50 and over represented 46% of those living with HIV in Australia, and that number is expected to increase. This is a result of a combination of factors, primarily the continuing advances in antiretroviral therapy, which have reduced the incidence of HIV-associated mortality. PLHIV are now living into their 80s and 90s with varying degrees of physical and/or cognitive decline. It is during this decline that PLHIV may need to consider a transition to aged care. The aim of this research is to explore and understand the experiences of older PLHIV facing the prospect of a life lived in aged care. To explore this topic an interpretative hermeneutic phenomenological methodology was considered most appropriate. This could best uncover the meaning behind the lived experience of older PLHIV considering transitioning to aged care. In this thesis, issues pertaining to the use of a hermeneutic phenomenological approach in this research are discussed, as well as issues around research representation or, as Koch states, “whose voice is being heard – the researcher’s, the participant’s or both”. Issues of integrity and trustworthiness are also discussed. Fifteen PLHIV aged 60 years and over volunteered to participate in this research, and their stories were collected in one-on-one, face-to-face interviews that were digitally recorded and transcribed. They shared their experiences of their life lived with HIV from their diagnosis to the present. This was useful to understand how that past history informed how they feel about their life as they age and as they consider their future. Paramount for this research was to learn their feelings and concerns around a transition to aged care and how these might be addressed and ameliorated. This study found that this group had different experiences of a life lived with HIV. This often depended on the era of their diagnosis. As well, there were differences in their considerations around a life lived in aged care in the future. Some participants completely rejected the notion of a transition to aged care, with a few mentioning euthanasia as their preference. Other participants believed that, with increased education around HIV and the existence of anti-discrimination legislation and aged care quality standards, they would be treated or cared for with respect and dignity, like others in the aged care sector. They felt that, with all the above in place, a life well lived within aged care would be achievable. Through this research the silence of the older PLHIV who participated, and hopefully of the larger older PLHIV community, has been broken. The new knowledge gained through this research has illuminated the meaning behind their experiences and future prospects. The findings from this research have given hope for many in this group that, with appropriate structures and practices, they would feel welcomed and embraced in aged care, resulting in a life well lived. It is now over to those who provide aged care to meet those hopes and expectations.Thesis (Ph.D.) -- University of Adelaide, Adelaide Nursing School, 202