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 programmes
Funder: Health Education England

Abstract: Background: Progress has been made in understanding, developing and supporting self-management for those with chronic pain, a long term condition that affects almost 28 million people in the UK. However, an unknown number of people have been excluded from or been unable to access the kind of multidisciplinary pain management programmes that are thought to be of benefit for supporting self-management. This may be because they are not eligible to participate or because they drop out of these programmes. Little is known about their experiences and what they do that constitutes self-management. Gaining a better understanding of peoples experiences of chronic pain and means of self-managing may help to identify the key indicators of successful self-management for them, and help professionals to appropriately support themAims: This research aims to: (1) identify, describe and define good practice and its implementation in relation to successful self-management of chronic pain by those who have been excluded from or dropped out of existing pain management programmes; (2) investigate the ways in which health care professionals (do and don't) seek to support people with chronic pain who have been excluded from pain management programmes, and the measures that might incentivise and make this easier; (3) map the policy context for supporting successful self-management of chronic pain; and (4) produce a set of materials that can be used to inform and support improved self-management for those living with chronic pain.Research question: How is self-management' achieved by people living with chronic pain who have been excluded from or have dropped out of existing pain management programmes, and how can they be better supported in policy and practice?Design: A multi-level qualitative study combining (micro-level) case studies of patients living with chronic pain who have been excluded from or dropped out of pain management programmes, with (meso-level) interviews with health care professionals and managers and (macro-level) analysis of policy documents.Participants: Up to 24 patients with chronic pain who have been excluded from or have dropped out of existing pain management programmes and healthcare professionals and managers involved in providing services for chronic pain.Potential benefit to patients and the NHS:Chronic pain affects a significant proportion of the population, many of whom access NHS services seeking treatment. Understanding the experiences of patients who have been unable to access specialist NHS services will provide insight into the impact that chronic pain has on their lives, their social networks and on areas of the NHS and voluntary sector. The research is aimed at supporting those living with chronic pain to live healthier lives. Hence, alongside dissemination of findings via usual academic routes, the following outputs are oriented to benefitting those living with chronic pain: A set of materials (videos) that can be used to inform and support improved self-management for those living with chronic pain. Recorded interviews (including videos) and transcripts will be held in a repository at the University of Oxford, subject to participant consent adding to the existing collection of qualitative data. This data will be available to researchers for secondary data analysis. A trigger' film made freely available online for use in service improvement projects. These films have been used successfully to bring patients, families and NHS staff together to facilitate experience based co-design and experience-led commissioning projects. This film will present the unique views of people living with chronic pain and how they self-manage their condition, thus opening up new avenues for improving access to health services for this group.

Lay abstract: Background to the researchPain 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.Self-management is an important part of living with chronic pain. It involves learning new skills and behaviours. (e.g. in some places, patients can learn about self-management through a local expert patient programme' which is run by a patient who has had some additional training). Research has shown that people from poorer backgrounds, older people and those from minority ethnic groups often do not attend these kind of programmes. Those who do report enjoying the programme but it does not often make a big difference in helping them self-manage their chronic pain.Specialist pain clinics in the NHS offer a programme where people are taught self-management skills and are able to practice them with support. They have been shown to be effective for chronic pain. However, there are issues around access, participation and inclusion: specialist pain clinics are not available in all areas; some people will drop out of the programme once it has started; others will choose not to take a place on the programme and others will be assessed and not offered a place. This means that many people are effectively excluded and do not have the chance to learn self-management skills. We do not currently know how patients who have not attended this programme are living with chronic pain.AimsThe proposed research aims to redress this, asking: how is self-management' achieved by people living with chronic pain who have been excluded from or have dropped out of existing pain management programmes? And how can they be better supported in policy and practice?The focus is on finding out:- how patients are coping without the support of a programme 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 programmes; and - what is happening to support self-management for people with chronic pain in policy.Study design and methodsThis is a qualitative study, using mixed methods. I will work with a team of researchers (Health Experiences Research Group, University of Oxford) who focus on understanding and analysing patient narratives about their experiences of health and health care.I will spend time with up to 24 patients who have been excluded from or have dropped out of pain management programmes, 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). I plan to spend time with a range of people (e.g. of different ages, backgrounds, ethnicities) and have included support from an interpreter to make this possible.I will also collect and analyse policy documents and interview health professionals and managers involved in specialist pain services. Patient and public involvementI have already spoken with patients living with chronic pain to identify: the topics that were important to them, what they wanted research to focus on and how they felt I should go about doing the research. Listening to their suggestions has led me to this topic and guided me to look at self-management of chronic pain (largely, but not exclusively) from a patient perspective. I plan to continue patient and public involvement throughout the research and my Advisory Group includes two lay representatives who are both people who are living with chronic pain. ?Dissemination and anticipated outputsMy focus is on producing outputs for a range of audiences that will support the development of inclusive, accessible and locally effective self-management programmes that maximise support for patients living with chronic pain. To this end I will: produce a video based on my interviews with patients in which they talk about the strategies they have and the things that they do to manage their condition in their daily lives. This will be freely available on http://www.healthtalk.org (a website run by the Health Experiences Research Group) for use to improve services; use social media to reach a public audience e.g. writing about emerging findings online, holding a twitter discussion or webinar focussed on self-management of chronic pain; attend community meetings where patients and members of the public can hear about the findings from my research; and feed findings back to researchers and health care professionals, via peer-reviewed journal papers and conference presentations.

Research activity codes: 7.1 INDIVIDUAL CARE NEEDS
Health categories: GENERIC HEALTH RELEVANCE