Lammons, William;
Nobility, Lucky;
Markham, Sarah;
Saloniki, Eirini-Christina;
(2024)
PPIE in a technical research study: Using public involvement to refine the concept and understanding and move towards a multidimensional concept of disability.
Health Expectations
, 27
(3)
, Article e14072. 10.1111/hex.14072.
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Abstract
Background: Disability is often an essentialised and oversimplified concept. We propose refining this while incorporating the multidimensional nature of disability by increasing the use of existing survey questions and their corresponding data to enrich, broaden and inform understandings of disability. Methods: We combined patient and public involvement and engagement (PPIE) with focus groups and concept mapping to collaboratively map disability survey questions into conceptual models of disability with six members of the public with lived experiences of disability. Results: Using reflexive thematic analysis, we identified three qualitative themes and eight subthemes through a series of four PPIE activities: (1) understanding concepts of disability based on individual experience, subthemes: 1.1—preference for the biopsychosocial model, 1.2—‘Reviewing’ instead of mapping survey questions and 1.3—comparing questions to real life; (2) consistency between understanding needs and implementing adjustments, subthemes: 2.1—connecting preparation and operation, 2.2—inclusivity and adjustments in activities and 2.3—feedback for improving activities and (3) real-world applications—targeted awareness raising, subthemes: 3.1—who, where, what and how to share activity findings and results, 3.2—sharing with human resource and equality, diversity and inclusion professionals. Conclusion: Members of the public who collaborated in these activities felt empowered, engaged and supported throughout this study. This approach offers a model for other researchers to cede power to the public over the research aspects typically reserved for researchers. Patient or Public Contribution: We involved members of the public with lived experience throughout this study—co-design, co-facilitation, collaboratively mapping the disability or disability-related survey questions into conceptual models of disability, evaluation of the activities, co-analysis and co-authorship.
| Type: | Article |
|---|---|
| Title: | PPIE in a technical research study: Using public involvement to refine the concept and understanding and move towards a multidimensional concept of disability |
| Location: | England |
| Open access status: | An open access version is available from UCL Discovery |
| DOI: | 10.1111/hex.14072 |
| Publisher version: | https://doi.org/10.1111/hex.14072 |
| Language: | English |
| Additional information: | This work is licensed under a Creative Commons License. The images or other third-party material in this article are included in the Creative Commons license, unless indicated otherwise in the credit line; if the material is not included under the Creative Commons license, users will need to obtain permission from the license holder to reproduce the material. To view a copy of this license, visit http://creativecommons.org/licenses/by/4.0/ |
| Keywords: | Science & Technology, Life Sciences & Biomedicine, Health Care Sciences & Services, Health Policy & Services, Public, Environmental & Occupational Health, disability, focus groups, mapping, public involvement, surveys |
| UCL classification: | UCL UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences |
| URI: | https://discovery.ucl.ac.uk/id/eprint/10205562 |
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