Uncharted territory: a report into the first generation growing older with HIV

SCIE Social Care Online
Terrence Higgins Trust
Publication date:
01 January 2017


Using a peer-led research model, this report updates the findings of a 2010 study on the needs and experiences of people aged 50 and over living with HIV. A total of 307 people living with HIV aged 50 or over participated in the research which included 246 completed surveys, and 30 interviews and six workshops conducted by peer researchers. The findings show that people living with HIV aged 50 and over are a diverse group in terms of employment, income, family and social relationships, and gender. The report discusses the findings and provides a series of recommendations in the following areas: the impact of the availability of HIV treatment on individuals' needs and experiences; differences in the experiences of those in the age group of 50-60 compared to those aged over 65; the impact of poverty; unmet social care needs of people living with HIV; the need for co-ordinated support to manage long-term conditions and self-care; the role of GPs in supporting people living with HIV aged 50 and over; social isolation and loneliness; experience of HIV self-stigma; and the needs of older women affected by HIV. Short case studies and quotations are included throughout. The report concludes that there are many individuals growing older with HIV who will require additional health and social care services or financial support. It also found that that living with HIV adds an extra level of need beyond ‘standard’ experiences of ageing.