Marie Curie and Terrence Higgins Trust launch research findings focusing on the experiences of those living with HIV approaching end of life, at an event at Lunch Positive, Brighton.
With an ageing population within the HIV community, it’s essential to get end of life care right. The research report explores themes identified throughout the project, including
- Experiences of lifelong discrimination in healthcare as a barrier to palliative care services
- Priorities for end of life: maintaining identity, preventing isolation and wishes for after death to be expressed during life
- Maintaining a sense of self through to death.
Read the report here
Author Affiliations
1 Marie Curie, London, England, UK
2 Terrence Higgins Trust, Brighton, England, UK
Abstract
This report draws on a collaborative and co-produced research project conducted by Marie Curie and Terrence Higgins Trust. Using an equity oriented, arts-based method, and an online survey, people living with HIV explored and considered what might be important for them towards the end of life.
Three key themes were identified through the project which provide useful insights for the future of palliative care for this population. These themes included how lifelong, intersecting experiences of discrimination negatively impact experiences of healthcare and ultimately upon access to care and support towards the end of life, the range of priorities for people towards the end of life, and the importance of maintaining a sense of self through life and into death. It is imperative that the learnings from this co-produced work are taken forward and implemented in both specialist HIV and generalist services to tackle the inequity that is evident in experiences faced by people living with HIV, throughout and towards the end of their lives.
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