Involving people with lived experience of homelessness in palliative and end of life care research: key considerations from experts in the field.
Res Involv Engagem
; 10(1): 16, 2024 Jan 30.
Article
en En
| MEDLINE
| ID: mdl-38291483
ABSTRACT
BACKGROUND:
Co-production of research aims to include people with lived experience of a phenomena throughout the research process. People experiencing homelessness often experience advance ill-health at a young age, yet access palliative care services at a disparately low rate to the level of palliative care need. The voices of people experiencing homelessness are infrequently heard throughout palliative care research, despite the complexities and intricacies of the area.AIM:
To explore the experiences of experts in the field to identify key context considerations for involving people with lived experience of homelessness in palliative and end of life care research.METHODS:
Qualitative study comprising two data collection streams interviews with professionals with experience of involving people experiencing homelessness in their work, and focus groups with people with lived experience (PWLE) of homelessness. Data were analysed using iterative, reflexive thematic analysis. Patient and Public Involvement contributors gave feedback on themes.RESULTS:
A total of 27 participants took part in semi-structured interviews (N = 16; professionals) or focus groups (N = 11; PWLE homelessness). Key considerations of involving people experiencing homelessness in palliative and end of life care research were developed into four key themes complexity of lived experience of homelessness; representation of homelessness within experts by experience; professionalising lived experience; and methods for involvement.CONCLUSIONS:
Involvement of people with lived experience of homelessness is important in developing palliative care research. This paper begins to outline some contextual considerations for promoting involvement in a complex and intricate field of research.
People experiencing homelessness often become unwell at a young age. They often experience several illnesses at the same time, and many people experiencing homelessness may also experience substance misuse disorders and/or mental illness.Despite this, they often are not identified as needing palliative care support, therefore rarely access services. Research into palliative care and homelessness may benefit from including people with lived experience of homelessness, yet this is rarely done, and is a sensitive and challenging area. The current study carried out interviews with professionals who have previously involved those with lived experience of homelessness in their work, and focus groups with people with lived experience of homelessness. Twenty seven participants took part 16 professionals with extensive experience of supporting PEH and 11 people with lived experience. Key considerations of involving people experiencing homelessness in palliative care research were developed into four key themes complexity of lived experience of homelessness; representation of homelessness within experts by experience; professionalising lived experience; and methods for involvement. Involvement of people with lived experience of homelessness is important in developing palliative care research. This paper begins to outline some contextual considerations for promoting involvement in a complex and intricate field of research.
Texto completo:
1
Colección:
01-internacional
Base de datos:
MEDLINE
Tipo de estudio:
Qualitative_research
Aspecto:
Determinantes_sociais_saude
Idioma:
En
Revista:
Res Involv Engagem
Año:
2024
Tipo del documento:
Article
País de afiliación:
Reino Unido
Pais de publicación:
Reino Unido