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‘A good decision is the one that feels right for me’: Codesign with patients to inform theoretical underpinning of a decision aid website

Authors :
Kelly Kohut
Kate Morton
Karen Hurley
Lesley Turner
The CanGene‐CanVar Patient Reference Panel
Caroline Dale
Susan Eastbrook
Rochelle Gold
Kate Henwood
Sonia Patton
Reshma Punjabi
Helen White
Charlene Young
Julie Young
Elizabeth Bancroft
Lily Barnett
Sarah Cable
Gaya Connolly
Beth Coad
Andrea Forman
Helen Hanson
Grace Kavanaugh
Katherine Sahan
Katie Snape
Bethany Torr
Rosalind Way
Elizabeth Winchester
Alice Youngs
The International Lynch Decision Aid Stakeholder Panel
Diana Eccles
Claire Foster
Source :
Health Expectations, Vol 27, Iss 1, Pp n/a-n/a (2024)
Publication Year :
2024
Publisher :
Wiley, 2024.

Abstract

Abstract Introduction Patient decision aids (PtDA) complement shared decision‐making with healthcare professionals and improve decision quality. However, PtDA often lack theoretical underpinning. We are codesigning a PtDA to help people with increased genetic cancer risks manage choices. The aim of an innovative workshop described here was to engage with the people who will use the PtDA regarding the theoretical underpinning and logic model outlining our hypothesis of how the PtDA would lead to more informed decision‐making. Methods Short presentations about psychological and behavioural theories by an expert were interspersed with facilitated, small‐group discussions led by patients. Patients were asked what is important to them when they make health decisions, what theoretical constructs are most meaningful and how this should be applied to codesign of a PtDA. An artist created a visual summary. Notes from patient discussions and the artwork were analysed using reflexive thematic analysis. Results The overarching theme was: It's personal. Contextual factors important for decision‐making were varied and changed over time. There was no one ‘best fit’ theory to target support needs in a PtDA, suggesting an inductive, flexible framework approach to programme theory would be most effective. The PtDA logic model was revised based on patient feedback. Conclusion Meaningful codesign of PtDA including discussions about the theoretical mechanisms through which they support decision‐making has the potential to lead to improved patient care through understanding the intricately personal nature of health decisions, and tailoring content and format for holistic care. Patient Contribution Patients with lived experience were involved in codesign and coproduction of this workshop and analysis as partners and coauthors. Patient discussions were the primary data source. Facilitators provided a semi‐structured guide, but they did not influence the patient discussions or provide clinical advice. The premise of this workshop was to prioritise the importance of patient lived experience: to listen, learn, then reflect together to understand and propose ideas to improve patient care through codesign of a PtDA.

Details

Language :
English
ISSN :
13697625 and 13696513
Volume :
27
Issue :
1
Database :
Directory of Open Access Journals
Journal :
Health Expectations
Publication Type :
Academic Journal
Accession number :
edsdoj.5d85ab691f14464786d07d0d55ab91d4
Document Type :
article
Full Text :
https://doi.org/10.1111/hex.13844