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'I felt part of the solution'. A qualitative study about the interface between lived experience advocates, professionals and organisations in the field of persistent pain

Lookup NU author(s): Dr Chris PenlingtonORCiD



This work is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License (CC BY-NC 4.0).


Objectives: To elicit perspectives of people with persistent pain about their experiences working with pain management professionals and services as patient advocates and to consider implications for current models of involving patients in service development and research. Design: reflexive thematic analysis from a critical realist perspective. Methods: Online interviews were conducted individually with 10 participants who had acted as patient advocates in the field of persistent pain. Participants were recruited through purposive and snowball sampling. Data were analysed and organised into themes and are presented descriptively. Results: The relationship between patient advocates and the organisations they help is conceptualised as ‘an unequal partnership’. Participants described positive and affirming experiences with individual health professionals and research teams (Respect). This often occurred within a context of inflexible organisational policies that presented barriers to participation including a lack of financial compensation and expectation to work to inflexible deadlines. As a result, patient advocates could experience a lack of value attributed to their experiences and voices (unmet needs from institutions). Conclusion: People with personal experience of engaging with services for persistent pain are in a strong position to contribute to service improvement. Although this contribution is recognised as valuable, it appears to be devalued by organisational barriers. Organisational policies around payment may lead to a lack of representation of those experiencing higher levels of disadvantage. As a result, services and policy makers may be missing out on insights that could be important for service development.

Publication metadata

Author(s): Hartley C, Penlington C

Publication type: Article

Publication status: Published

Journal: British Journal of Pain

Year: 2024

Volume: 18

Issue: 2

Pages: 120-127

Print publication date: 01/04/2024

Online publication date: 18/10/2023

Acceptance date: 19/09/2023

Date deposited: 29/11/2023

ISSN (print): 049-4637

ISSN (electronic): 2049-4645

Publisher: Sage Publications Ltd


DOI: 10.1177/20494637231208


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