Marie Curie, London, UK.
University of York, York, UK.
Palliat Med. 2024 Jul;38(7):746-754. doi: 10.1177/02692163241259667. Epub 2024 Jun 19.
Palliative care for people experiencing homelessness is a complex field. Due to the intricate nuances and heterogeneity in the experience of palliative care for people without secure housing, it is essential that research is informed by people with lived experience of homelessness. However, as homelessness is often associated with loss, trauma and high levels of exposure to death, any co-production of research, particularly in the field of palliative and end-of-life-care, must be trauma-informed.
To produce recommendations for co-producing palliative and end-of-life-care research with people with lived experience of homelessness.
A qualitative study comprising semi-structured interviews and focus groups. Data were analysed using iterative, reflexive thematic analysis.
SETTING/PARTICIPANTS: Twenty-seven participants were recruited. Sixteen professionals with experience of co-producing research with people with lived experience of homelessness; eleven people with lived experience of homelessness.
Six key themes were developed: transparency, importance of engagement and rapport, facilitating equitable involvement via person centred approach, financial recognition of involvement, involvement and growth through a trauma-informed approach and navigating institutional resistance and attitudes. Recommendations corresponding to the core themes were developed (TIFFIN recommendations).
Co-production of palliative care research with people with lived experience of homelessness is essential, but must be done carefully and sensitively. As a population with high levels of premature morbidity and mortality yet low access to palliative care, the TIFFIN recommendations could help to support the involvement of people with lived experience of homelessness in palliative and end-of-life-care care research.
为无家可归者提供姑息治疗是一个复杂的领域。由于无固定住所者在接受姑息治疗方面的体验存在复杂的细微差别和异质性，因此必须让有过无家可归经历的人参与研究。然而，由于无家可归通常与失去、创伤和大量接触死亡有关，因此，任何合作研究，特别是在姑息治疗和临终关怀领域，都必须考虑到创伤因素。
为与有过无家可归经历的人共同开展姑息治疗和临终关怀研究提供建议。
一项包括半结构化访谈和焦点小组的定性研究。使用迭代、反思性主题分析对数据进行分析。
地点/参与者：招募了 27 名参与者。其中 16 名是有共同参与有过无家可归经历的人开展研究经验的专业人士；11 名是有过无家可归经历的人。
提出了六个关键主题：透明度、参与和融洽关系的重要性、通过以人中心的方法促进公平参与、对参与的财务认可、通过创伤知情方法的参与和成长以及应对机构抵制和态度。针对核心主题制定了相应的建议（Tiffin 建议）。
与有过无家可归经历的人共同开展姑息治疗研究至关重要，但必须谨慎而敏感地进行。作为一个过早出现高发病率和死亡率但获得姑息治疗机会有限的群体，Tiffin 建议可以帮助支持有过无家可归经历的人参与姑息治疗和临终关怀研究。
