Article Text
Abstract
Background Co-production involves carrying out research ‘with’, rather than ‘on’ or ‘about’ people (Filipe, Renedo, Marston. PLoS Biology. 2017;15(5):e2001403). People with lived experience (PWLE) become members of the core research team, outside of a traditional hierarchy. People experiencing homelessness often become unwell at a much younger age than the general population (Aldridge, Menezes, Lewer, et al. Wellcome Open Res. 2019;4:49), yet due to a number of complex psycho-social factors, often don’t access the care they require (Hudson, Flemming, Shulman, et al. BMC Palliat Care. 2016 Dec;15(1):1–8). The experience of palliative care for people without secure housing is heterogenous and complex and can be difficult to understand and capture within research. As a result, it’s crucial to involve people with lived experience of homelessness in palliative care research (Crooks, Flemming, Shulman, et al. Res Involv Engagem. 2024;10(1):16).
Aim To co-produce recommendations to support researchers to co-produce palliative and end of life care research with people with lived experience of homelessness.
Methods In this qualitative study, data were collected via two streams: Semi-structured interviews with professionals with experience of involving PWLE in research (N = 16), and two focus groups with PWLE homelessness (N = 11). Data were analysed using an iterative, reflexive thematic analysis approach; collaborative analysis and a feedback-loop with professionals and PWLE homelessness was used to develop final recommendations.
Results Six key themes were developed (TIFFIN): Transparency of parameters for involvement, Importance of engagement and rapport, Facilitating equitable involvement, Financial recognition, Involvement and growth through a trauma-informed approach, and Navigating institutional resistance (TIFFIN). Consequently, eighteen recommendations were established.
Conclusions Co-production of palliative care research with PWLE 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 PWLE of homelessness in palliative and end of life care research, to ultimately inform practice and improve experiences.