Exploring barriers to and experiences of palliative and end-of-life care for people living with HIV: a cross-sectional survey

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Abstract
Objectives To explore priorities, barriers to and experiences of palliative and end-of-life care from the perspectives of people living with HIV. Design Cross-sectional online survey conducted in the UK between September 2024 and November 2024. Setting Online survey of people living with HIV. Participants The sample (N=90) was adults living with HIV in the UK. The majority of participants were male (82.4%), gay men (77.8%) and white (88.1%). Results The majority of participants (58.9%) reported knowing what palliative care was and that they could explain it to someone else; however, a misconception about palliative care being only for the end of life was evident. Over a quarter of respondents (27.8%) reported that their HIV status ‘Sometimes’ negatively affected their experiences of care in general practitioner, hospital and dental settings. The top three priorities for end of life were (1) being in a calm atmosphere, (2) being free of pain and (3) support with psychological well-being. Not being judged was also identified as a priority. Conclusion To promote integration of palliative and end-of-life care into care pathways for people living with HIV, partnerships with HIV services and charities may be needed as well as tailored messaging and training for staff in generalist services.
Funding Information
  • Marie Curie (MCSGS-23-103)

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