Designing and delivering palliative and end of life care research with people living with HIV: reflections from a co-produced study

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. The introduction and advancement of medication such as antiretroviral therapy (ART) has helped reduce transmission of HIV. This has meant that fewer people are dying as a direct result of HIV, and the life expectancy for people living with HIV is almost the same as the general population in many countries. As people living with HIV are living longer, many are being diagnosed with age-related advanced illnesses, such as cancer, respiratory illnesses or dementia. It is important that HIV care services work together with other medical disciplines, such as palliative and end of life care, to ensure a positive care experience in line with a patient’s wishes. Palliative care can be useful to support people living with HIV who are approaching the end of their lives, with or without another illness. Some research suggests that people living with HIV may face barriers in accessing palliative care services. Therefore, it is important to hear from people living with HIV how they would like to be supported towards the end of their lives, so services can be designed with the voices of lived experience at their centre. Research and codesign are needed to gather the information needed. This paper outlines reflections from the co-production group, including people living with HIV, from a research project about how to support people living with HIV to be involved in research about palliative and end of life care.