An ecosystem of living with severe, long-term pain – the role of (un)accepting systems: a qualitative study
DOI:
https://doi.org/10.59210/b6py9v95Keywords:
chronic pain, pain care, health inequalities, health equity, biopsychosocial, socioeconomic factorsAbstract
Background: Coming to terms with chronic pain is a complex process. In earlier research, we found that accepting chronic pain is a fluid and continuous journey, experienced within socio-cultural-political worlds, which we conceptualised as an Ecosystem. These findings showed potentially unequal opportunities to experience a positive state of acceptance, with scope for improvements. We did not know how people living with chronic pain may relate to the findings. We therefore aimed to contextualise our (earlier) findings with people who live with chronic pain and experience marginalisation, and to generate ideas for improvement based on the concept of any individual journey with acceptance taking place within an ‘Ecosystem.’
Methods: We recruited through NHS contacts. We used focus groups and diaries to collect qualitative data, which we explored using thematic analysis. The research is exploratory in nature.
Results: We recruited seven participants (two men, five women), all living with severe chronic pain and multiple long-term conditions. Most described difficulty making ends meet, none were in paid employment, nor had university degree level of formal education.
We found three themes from the qualitative data analysis, two focused on structural, systemic features: ‘unaccepting, disconnected and dehumanising systems: treated like ‘tick boxes,’’ and ‘connected, understanding and accepting systems: towards inclusion.’ One theme showed the individual nature of experiences; ‘individual variations in the experiences and journey of coming to terms and living with chronic pain.’
Conclusions: Our findings show new insights into phenomena associated with coming to terms (and living) with chronic pain; including how state systems, structures and societal attitudes can influence experiences. Individuals with chronic pain may accept aspects of their painful condition, however, others around them, healthcare staff and institutional structures may not accept (or account for) the nature of chronic pain, leading to distress, stigmatisation, and feeling misunderstood. We demonstrate a focus on working with individuals with chronic pain, without socioeconomic privilege, to give insights into their lives and the impact of social context including political decisions – pain is unavoidably political for those at the sharp end of these experiences.
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Copyright (c) 2026 Cassandra Macgregor, David N Blane, Sivaramkumar Shanmugam, Chris Seenan (Author)
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