Designing and delivering palliative and end of life care research with people living with HIV: reflections from a...

With improvements in antiretroviral therapy (ART), the life expectancy of people living with HIV is increasing towards that of the general population in many countries. As people living with HIV live longer, many are experiencing co-morbidities of age including advanced, life-limiting illnesses. Research has since highlighted both the need for and effectiveness of palliative care for people living with HIV. Therefore, as these co-morbidities become more prevalent, HIV services will increasingly need to draw on a wide range of medical disciplines, including palliative and end of life care. To ensure that research and subsequent policy and practice recommendations for service design and delivery reflect the wishes and priorities of people living with HIV, it is important that people living with HIV are supported to be involved in, and co-produce research in this field, where they wish to. The current study provides reflections from a co-production team including people living with HIV, considering successes and challenges of research involvement in this field.

Reflections were gathered from the multi-disciplinary steering group meetings, attended by the co production group. Some members of the co-production were researchers, some were charity representatives and some had lived experience of HIV. These reflections were part of a study that aimed to enable people living with HIV to explore and consider what is important for them at the end of life. Steering group meetings were recorded and transcribed verbatim. Reflexive thematic analysis was used to code data and develop themes relating to how people living with HIV were involved in the research.

This paper shares insights from a co-production group, including people living with HIV, on designing and delivering palliative care research. As more adults with HIV require palliative support, aligning care with their needs is essential. Involving people with HIV in research can improve future services and promote fair access to end-of-life support. This paper provides reflections on achieving this.