Supporting self-management strategies for people with chronic pain
Research type
Research Study
Full title
Supporting successful self-management strategies for people living with chronic pain: a mixed methods study focused on those who have been excluded from or dropped out of pain management services
IRAS ID
257463
Contact name
Jacqueline Walumbe
Contact email
Sponsor organisation
University of Oxford / Clinical Trials and Research Governance
Duration of Study in the UK
2 years, 0 months, 3 days
Research summary
Summary of Research
Pain that continues for 3-6 months after an injury or illness has healed is called chronic pain and affects an estimated 28 million people in the UK. Availability and access to support from health care professionals is variable despite evidence that this support can improve outcomes for patients.This research focuses on the experiences of people living with chronic pain who have been excluded from or have dropped out of existing pain management services. It will illuminate what constitutes ‘self-management’ in this group and investigate how the organisational and policy context can better support them.
The research uses a combination of qualitative methods including interviews (with patients, health care professionals and commissioners), observation of lived experiences and analysis of national policy documents. We will spend time with patients who have been excluded from or have dropped out of pain management services, talking to them about their experiences of chronic pain and strategies for self-management and encouraging them to capture some of these experiences (e.g. via journals and digital photos). Data collected will be analysed thematically, paying particular attention to the stories or narratives of those involved and presented to different audiences using a combination of video and written guidance to improve how services support this growing group of patients.
Summary of Results
CHronic pAin Self-Management (CHASM)My research explored three areas:
• How patients with chronic pain (sometimes called long term or persistent pain) are coping without the support of a specialist service and what they do to help themselves
• How health professionals do (or perhaps don’t) support patients who drop out or who are not able to attend pain management services
• What is happening to support self-management for people with chronic pain in policyI found that there were multiple concepts of pain, but this was not always clear when people related with each other and with health services. The different meanings of pain often led to disagreements about what treatment people with pain were offered.
People living with pain, health professionals and policy makers did not all understand or practise self-management of chronic pain in one way. People living with pain sometimes bypassed the type of pain management offered by NHS services (often based on psychological approaches such as cognitive behavioural therapy). They dealt with pain through changing relationships with their bodies, other people, places, objects, practices & activities.
Current ways of discussing pain are focused on ‘personal responsibility’ and ‘cost/benefit analysis’ approaches. I argue instead that we need a different way of thinking about access to pain care services which could involve:
– Spreading investment beyond traditional pain services – Extending support to non-healthcare settings in our communities – Pay more attention to how people live with chronic pain in relation to others.In the next phase of this project, I will be running workshops with patients, their local communities, and health professionals to understand what works and what doesn’t work both within the NHS and in wider society, and use this understanding to reimagine pain care from a more human centred perspective.
REC name
London - Camberwell St Giles Research Ethics Committee
REC reference
19/LO/1278
Date of REC Opinion
1 Oct 2019
REC opinion
Further Information Favourable Opinion