Specialist community care teams will continue to play an important role for people living with HIV, particularly with clients who are ageing and were diagnosed before new treatments were introduced in 1996, new research shows.

Researchers found many people with HIV have experienced, and continue to experience, stigma and discrimination when seeking services to support them at home.

RDNS’ (Royal District Nursing Service) Melbourne-based HIV team, which supports 220 clients with an average age of 55, has published the findings in the Journal of the Association of Nurses in AIDS Care.

The survey completed by 86 clients, of whom 57 per cent were aged 41-60 and 25 per cent were over 61, found the areas of greatest concern for the future were the availability of ongoing support and the capacity to live independently.

Respondents diagnosed before 1996 were more likely to be “very concerned” about being forced to leave their home (45.9 per cent) or having to go into residential aged care (40.5 per cent).

“My youth is gone. I worry about companionship and being with people and services who are non-judgmental as I age,” one man diagnosed in the 1980s said.

“Ageing with HIV presents a range of biomedical complexities that are only now being revealed and better understood,” research leader and HIV team leader Dr Liz Crock found.

Nurses caring for people with HIV in the community needed ongoing education to manage complex issues related to mental health and wellbeing, access to housing, health promotion and mental health, drug and alcohol issues, she said.

As people living with HIV are now ageing, and a higher percentage are experiencing multiple co-morbidities at an earlier age than non HIV people,  research suggests there will be an increase in the number of people seeking community and aged care support.

Respondents with a longer time since diagnosis were more susceptible to greater anxiety regarding the future and needed extra psychological and social support, the study found. Specialist HIV teams remained particularly important for this group to provide advocacy and support in their journey and to the people who support them, she said.

“The mental health support needs of this group emerged as an important priority, along with the provision of chronic pain management, and palliative care tailored to an ageing cohort with diverse socio-cultural characteristics,” Dr Crock found.

“The study underlined the importance of holistic, expert community nursing services, encompassing psycho-social support, health promotion, clinical care and end of life support.

“Such services can play an important role in protecting and improving the quality of life of long term HIV survivors, and in engaging and retaining people belonging to marginalized groups in HIV clinical care and support.”

Today is World AIDS Day.

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