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Development of the TIFFIN recommendations for co-producing palliative and end-of-life care research with individuals with lived experience of homelessness: A qualitative study.

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Title: Development of the TIFFIN recommendations for co-producing palliative and end-of-life care research with individuals with lived experience of homelessness: A qualitative study.
Authors: Crooks, Jodie, Flemming, Kate, Shulman, Caroline, Casey, Emma, Hudson, Briony
Source: Palliative Medicine. Jul2024, Vol. 38 Issue 7, p746-754. 9p.
Subjects: Palliative treatment, Research funding, Qualitative research, Focus groups, Human research subjects, Interviewing, Descriptive statistics, Experience, Thematic analysis, Medical research, Research methodology, Terminal care, Homelessness, Data analysis software
Abstract: Background: 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. Aim: To produce recommendations for co-producing palliative and end-of-life-care research with people with lived experience of homelessness. Design: 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. Results: 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). Conclusions: 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. [ABSTRACT FROM AUTHOR]
Copyright of Palliative Medicine is the property of Sage Publications Inc. and its content may not be copied or emailed to multiple sites without the copyright holder's express written permission. Additionally, content may not be used with any artificial intelligence tools or machine learning technologies. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)
Database: Psychology and Behavioral Sciences Collection
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  Data: Development of the TIFFIN recommendations for co-producing palliative and end-of-life care research with individuals with lived experience of homelessness: A qualitative study.
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  Data: <searchLink fieldCode="AR" term="%22Crooks%2C+Jodie%22">Crooks, Jodie</searchLink><br /><searchLink fieldCode="AR" term="%22Flemming%2C+Kate%22">Flemming, Kate</searchLink><br /><searchLink fieldCode="AR" term="%22Shulman%2C+Caroline%22">Shulman, Caroline</searchLink><br /><searchLink fieldCode="AR" term="%22Casey%2C+Emma%22">Casey, Emma</searchLink><br /><searchLink fieldCode="AR" term="%22Hudson%2C+Briony%22">Hudson, Briony</searchLink>
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  Data: <searchLink fieldCode="DE" term="%22Palliative+treatment%22">Palliative treatment</searchLink><br /><searchLink fieldCode="DE" term="%22Research+funding%22">Research funding</searchLink><br /><searchLink fieldCode="DE" term="%22Qualitative+research%22">Qualitative research</searchLink><br /><searchLink fieldCode="DE" term="%22Focus+groups%22">Focus groups</searchLink><br /><searchLink fieldCode="DE" term="%22Human+research+subjects%22">Human research subjects</searchLink><br /><searchLink fieldCode="DE" term="%22Interviewing%22">Interviewing</searchLink><br /><searchLink fieldCode="DE" term="%22Descriptive+statistics%22">Descriptive statistics</searchLink><br /><searchLink fieldCode="DE" term="%22Experience%22">Experience</searchLink><br /><searchLink fieldCode="DE" term="%22Thematic+analysis%22">Thematic analysis</searchLink><br /><searchLink fieldCode="DE" term="%22Medical+research%22">Medical research</searchLink><br /><searchLink fieldCode="DE" term="%22Research+methodology%22">Research methodology</searchLink><br /><searchLink fieldCode="DE" term="%22Terminal+care%22">Terminal care</searchLink><br /><searchLink fieldCode="DE" term="%22Homelessness%22">Homelessness</searchLink><br /><searchLink fieldCode="DE" term="%22Data+analysis+software%22">Data analysis software</searchLink>
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  Data: Background: 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. Aim: To produce recommendations for co-producing palliative and end-of-life-care research with people with lived experience of homelessness. Design: 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. Results: 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). Conclusions: 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. [ABSTRACT FROM AUTHOR]
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  Data: <i>Copyright of Palliative Medicine is the property of Sage Publications Inc. and its content may not be copied or emailed to multiple sites without the copyright holder's express written permission. Additionally, content may not be used with any artificial intelligence tools or machine learning technologies. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract.</i> (Copyright applies to all Abstracts.)
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        Value: 10.1177/02692163241259667
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        Text: English
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        PageCount: 9
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      – SubjectFull: Palliative treatment
        Type: general
      – SubjectFull: Research funding
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      – SubjectFull: Qualitative research
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      – SubjectFull: Interviewing
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      – SubjectFull: Descriptive statistics
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      – SubjectFull: Experience
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      – SubjectFull: Research methodology
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      – SubjectFull: Terminal care
        Type: general
      – SubjectFull: Homelessness
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      – SubjectFull: Data analysis software
        Type: general
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      – TitleFull: Development of the TIFFIN recommendations for co-producing palliative and end-of-life care research with individuals with lived experience of homelessness: A qualitative study.
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              Text: Jul2024
              Type: published
              Y: 2024
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