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Co-designing a cancer care intervention: reflections of participants and a doctoral researcher on roles and contributions
BACKGROUND: Patient and Public Involvement is most usually framed in the context of designing, conducting and/or disseminating research. Participatory methods such as Experience-Based Co-Design (EBCD) further allow service users to directly engage in developing, testing and implementing intervention...
Autores principales: | , , , , , , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
BioMed Central
2022
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9343815/ https://www.ncbi.nlm.nih.gov/pubmed/35918715 http://dx.doi.org/10.1186/s40900-022-00373-7 |
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author | Tanay, Mary Anne Lagmay Armes, Jo Oakley, Catherine Sage, Lesley Tanner, Deb Roca, Jose Bryson, Liz Greenall, Barbara Urwin, Lauren Wyatt, Toni Robert, Glenn |
author_facet | Tanay, Mary Anne Lagmay Armes, Jo Oakley, Catherine Sage, Lesley Tanner, Deb Roca, Jose Bryson, Liz Greenall, Barbara Urwin, Lauren Wyatt, Toni Robert, Glenn |
author_sort | Tanay, Mary Anne Lagmay |
collection | PubMed |
description | BACKGROUND: Patient and Public Involvement is most usually framed in the context of designing, conducting and/or disseminating research. Participatory methods such as Experience-Based Co-Design (EBCD) further allow service users to directly engage in developing, testing and implementing interventions and services alongside healthcare staff. This paper aims to explore how participants in an EBCD project came—over time—to perceive their role and involvement in co-designing a cancer care intervention. METHODS: The findings are based on our reflections, a research diary, email correspondence and fieldnotes from co-design events. Co-design participants who attended most of the ten co-design events took part through written reflections or audio-recorded video calls. Ten reflective pieces were collected from clinicians (n = 4), PPI group members/patient participants (n = 4), a doctoral researcher (n = 1) and a visual illustrator (n = 1). Inductive data analysis of participant reflections was carried out using reflexive thematic analysis. Meeting fieldnotes, email correspondence and the researcher’s diary were deductively analysed using the initial themes generated from this inductive analysis. RESULTS: Five main themes were identified: (1) changing perception of roles during the co-design process, (2) defining a ‘co-designer’, (3) engagement and ownership, (4) role of the research facilitator in maintaining momentum, and (5) perceived benefits of involvement. CONCLUSION: Our findings show the changing perceptions of roles and contributions among participants over time. Patients typically described their role as co-designers in terms simply of sharing their experiences. In contrast, clinicians perceived themselves as co-designers because they were working with patients who were actively involved in decision-making. Levels of engagement were affected by several factors such as time and facilitation, but most participants came to view themselves as co-owners of the intervention. Overall, participants perceived their involvement as a positive experience with clinicians also reporting wider positive impacts on their clinical practice. |
format | Online Article Text |
id | pubmed-9343815 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2022 |
publisher | BioMed Central |
record_format | MEDLINE/PubMed |
spelling | pubmed-93438152022-08-02 Co-designing a cancer care intervention: reflections of participants and a doctoral researcher on roles and contributions Tanay, Mary Anne Lagmay Armes, Jo Oakley, Catherine Sage, Lesley Tanner, Deb Roca, Jose Bryson, Liz Greenall, Barbara Urwin, Lauren Wyatt, Toni Robert, Glenn Res Involv Engagem Research BACKGROUND: Patient and Public Involvement is most usually framed in the context of designing, conducting and/or disseminating research. Participatory methods such as Experience-Based Co-Design (EBCD) further allow service users to directly engage in developing, testing and implementing interventions and services alongside healthcare staff. This paper aims to explore how participants in an EBCD project came—over time—to perceive their role and involvement in co-designing a cancer care intervention. METHODS: The findings are based on our reflections, a research diary, email correspondence and fieldnotes from co-design events. Co-design participants who attended most of the ten co-design events took part through written reflections or audio-recorded video calls. Ten reflective pieces were collected from clinicians (n = 4), PPI group members/patient participants (n = 4), a doctoral researcher (n = 1) and a visual illustrator (n = 1). Inductive data analysis of participant reflections was carried out using reflexive thematic analysis. Meeting fieldnotes, email correspondence and the researcher’s diary were deductively analysed using the initial themes generated from this inductive analysis. RESULTS: Five main themes were identified: (1) changing perception of roles during the co-design process, (2) defining a ‘co-designer’, (3) engagement and ownership, (4) role of the research facilitator in maintaining momentum, and (5) perceived benefits of involvement. CONCLUSION: Our findings show the changing perceptions of roles and contributions among participants over time. Patients typically described their role as co-designers in terms simply of sharing their experiences. In contrast, clinicians perceived themselves as co-designers because they were working with patients who were actively involved in decision-making. Levels of engagement were affected by several factors such as time and facilitation, but most participants came to view themselves as co-owners of the intervention. Overall, participants perceived their involvement as a positive experience with clinicians also reporting wider positive impacts on their clinical practice. BioMed Central 2022-08-02 /pmc/articles/PMC9343815/ /pubmed/35918715 http://dx.doi.org/10.1186/s40900-022-00373-7 Text en © The Author(s) 2022 https://creativecommons.org/licenses/by/4.0/Open AccessThis article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/ (https://creativecommons.org/licenses/by/4.0/) . The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/ (https://creativecommons.org/publicdomain/zero/1.0/) ) applies to the data made available in this article, unless otherwise stated in a credit line to the data. |
spellingShingle | Research Tanay, Mary Anne Lagmay Armes, Jo Oakley, Catherine Sage, Lesley Tanner, Deb Roca, Jose Bryson, Liz Greenall, Barbara Urwin, Lauren Wyatt, Toni Robert, Glenn Co-designing a cancer care intervention: reflections of participants and a doctoral researcher on roles and contributions |
title | Co-designing a cancer care intervention: reflections of participants and a doctoral researcher on roles and contributions |
title_full | Co-designing a cancer care intervention: reflections of participants and a doctoral researcher on roles and contributions |
title_fullStr | Co-designing a cancer care intervention: reflections of participants and a doctoral researcher on roles and contributions |
title_full_unstemmed | Co-designing a cancer care intervention: reflections of participants and a doctoral researcher on roles and contributions |
title_short | Co-designing a cancer care intervention: reflections of participants and a doctoral researcher on roles and contributions |
title_sort | co-designing a cancer care intervention: reflections of participants and a doctoral researcher on roles and contributions |
topic | Research |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9343815/ https://www.ncbi.nlm.nih.gov/pubmed/35918715 http://dx.doi.org/10.1186/s40900-022-00373-7 |
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