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‘I Will Fight for People to Not Have the Experience I’ve Had’: A Thematic Analysis of the Experiences and Perspectives of Chronic Pain Lived Experience Advocates

Lookup NU author(s): Dr Chris PenlingtonORCiD



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


Navigating the healthcare system with chronic pain, alongside navigating the experience of the chronic pain itself, is recognised to be highly challenging. Frequently available interventions do not fully meet the needs of people with chronic pain. This study aimed to explore the perspectives of people who have been through these experiences and now support and campaign for improved approaches to chronic pain management. Semi-structured interviews of ten participants who independently support others through some form of chronic pain advocacy or support were conducted online. Data were digitally recorded, transcribed and analysed using reflexive thematic analysis, through a critical realist and constructivist lens. Data were interpreted to represent a journey into chronic pain advocacy, represented by three overarching themes. Advocacy as healing incorporates subthemes of pain trauma, gaining knowledge and using my experience for good. Unequal partnership includes respect and unmet needs from institutions. The final theme, evolution, relates to two subthemes of pushing boundaries and personal growth. Participants talked about the dual benefit of their contribution to pain advocacy, both in terms of helping others and also their own personal benefit. Overall findings indicated that pain advocacy can take multiple and various forms. Commonly, our participants who took on the role of pain advocacy were motivated by their own early difficult experiences, both navigating their pain and healthcare systems, and by a wish for others to not have to have similar difficult experiences. Having taken on the role, despite its challenges rewards can include recognition and personal growth.

Publication metadata

Author(s): Hartley C, Penlington C

Publication type: Article

Publication status: Published

Journal: Qualitative Health Research

Year: 2023

Volume: 33

Issue: 11

Pages: 995-1004

Print publication date: 01/09/2023

Online publication date: 23/08/2023

Acceptance date: 26/06/2023

Date deposited: 27/06/2023

ISSN (print): 1049-7323

ISSN (electronic): 1552-7557

Publisher: Sage


DOI: 10.1177/10497323231188639

ePrints DOI: 10.57711/01d6-d308


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