OP-16 Exploring barriers to and experiences of palliative and end of life care support for people living with HIV

<h3>Introduction</h3> There is little research exploring the views and experiences of people living with HIV with regards to palliative care. People who were diagnosed with HIV in the 1980s/90s may have experienced severe discrimination and poor access to health care, which may influence their views and experiences regarding planning for and accessing end of life services. <h3>Aims</h3> To coproduce research exploring the needs of, and barriers experienced by people living with HIV when planning for and accessing palliative and end of life care. <h3>Methods</h3> A steering group including people with lived experience was established to codesign, develop and guide each stage of the research. Three cohorts of workshops, utilising the No Barriers Here © methodology were carried out with people living with HIV. Session transcripts were analysed using reflexive thematic analysis in collaboration with the steering group. In addition, an online survey was collaboratively developed to further explore views and experiences of palliative care among people living with HIV. <h3>Results</h3> 27 participants attended all 3 workshop sessions. Three key themes were developed: the impact of lifelong discrimination; priorities for end of life care; and maintaining sense of self through to death. The survey is live at the time of submission; results will be outlined in the session. <h3>Conclusion</h3> This co-produced research highlighted end of life care aspects that are important to people living with HIV, including maintaining one’s identity and companionship. As the population of adults living with HIV needing palliative care support grows, consideration is needed to ensure care aligns with needs and priorities. <h3>Impact</h3> An established working relationship between Marie Curie and the Terrence Higgins Trust which can be the foundation of future work. Co-produced key information (from the perspective of people living with HIV) that can inform service development or delivery for this population.

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Published
2025-02-01
DOI
https://doi.org/10.1136/spcare-2025-mcrc.16
Primary Topic
Palliative Care and End-of-Life Issues
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article
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article

OP-16 Exploring barriers to and experiences of palliative and end of life care support for people living with HIV

Jodie Crooks, Tim Holt, Michael B Brimacombe, Briony F. Hudson et al.
Palliative Care and End-of-Life Issues
article

OP-16 Exploring barriers to and experiences of palliative and end of life care support for people living with HIV

Jodie Crooks, Tim Holt, Michael B Brimacombe, Briony F. Hudson, Robert Macrowan, Marc Tweed, Lynne Hughes, Louisa Dreja, Richard Jeneway
article en

Abstract

<h3>Introduction</h3> There is little research exploring the views and experiences of people living with HIV with regards to palliative care. People who were diagnosed with HIV in the 1980s/90s may have experienced severe discrimination and poor access to health care, which may influence their views and experiences regarding planning for and accessing end of life services. <h3>Aims</h3> To coproduce research exploring the needs of, and barriers experienced by people living with HIV when planning for and accessing palliative and end of life care. <h3>Methods</h3> A steering group including people with lived experience was established to codesign, develop and guide each stage of the research. Three cohorts of workshops, utilising the No Barriers Here © methodology were carried out with people living with HIV. Session transcripts were analysed using reflexive thematic analysis in collaboration with the steering group. In addition, an online survey was collaboratively developed to further explore views and experiences of palliative care among people living with HIV. <h3>Results</h3> 27 participants attended all 3 workshop sessions. Three key themes were developed: the impact of lifelong discrimination; priorities for end of life care; and maintaining sense of self through to death. The survey is live at the time of submission; results will be outlined in the session. <h3>Conclusion</h3> This co-produced research highlighted end of life care aspects that are important to people living with HIV, including maintaining one’s identity and companionship. As the population of adults living with HIV needing palliative care support grows, consideration is needed to ensure care aligns with needs and priorities. <h3>Impact</h3> An established working relationship between Marie Curie and the Terrence Higgins Trust which can be the foundation of future work. Co-produced key information (from the perspective of people living with HIV) that can inform service development or delivery for this population.

University College London (GB), Marie Curie (GB), Terrence Higgins Trust (GB)
Openalex Percentile: Top 97%
Palliative Care and End-of-Life Issues
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