ArticleQualitative health research2023
'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.
Article in Qualitative health research, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 4 papers.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
4 citing papers in PubMed.
- Navigating Health Care with Concurrent Jaw and Neck Pain: A Patient-Centered Perspective.JDR clinical and translational research · 2026Article
- "I'm in pain, and I'm not faking it": A qualitative exploration of the reactions of youth with juvenile idiopathic arthritis and their caregivers to pain-related stigma.Arthritis research & therapy · 2025Article
- Complex chronic adverse events following immunization: a systemic critique and reform proposal for vaccine pharmacovigilance.Therapeutic advances in drug safety · 2025Article
- '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.British journal of pain · 2024Article
Corrections and comments
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Authors and funding
2 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
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 10 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 sub-themes 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 sub-themes 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 similar difficult experiences. Having taken on the role, despite its challenges, rewards can include recognition and personal growth.
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