Title: A meta-ethnography of how children and young people with chronic non-cancer pain and their families experience and understand their condition, pain services and treatments
Funder: Chief Scientist Office, Scotland

Abstract: At least 8% of children and young people in the United Kingdom (UK) have chronic pain. Chronic pain is pain which lasts for 12 weeks or more. It can lead to poorer health and quality of life. Children often miss school and social activities because of their pain. Chronic pain can lead to higher use of NHS services and treatments. Treating chronic pain in adolescents alone costs the NHS about £4billion a year. It also costs families money to travel to healthcare appointments and for them to take time off work to care for their child. If a child’s chronic pain is not successfully treated it can continue into adulthood._x000D_ _x000D_ In the UK, there are few services for managing children’s chronic pain. To improve health care, the NHS needs to know:_x000D_ - what it is like for children to have chronic pain and get NHS treatment for this _x000D_ - what children and their families want from services and treatments. _x000D_ _x000D_ There are published research studies which have asked children with chronic pain and their families about their experiences and views. For example, about what it is like to live with chronic pain, their experiences of health care, or what they want to get from treatment. It can be very useful to pull together the different findings and viewpoints in all those studies to try to understand more about children’s chronic pain. Meta-ethnography is an approach for helping researchers to pull together these types of studies._x000D_ _x000D_ We will carry out a meta-ethnography to find out how children and young people who have chronic pain and their families _x000D_ 1. think about chronic pain_x000D_ 2. live with chronic pain_x000D_ 3. think of how NHS services treat their pain _x000D_ 4. and what they want from NHS services and treatments._x000D_ _x000D_ We will bring together the findings of all the studies looking at these topics to answer our questions._x000D_ Our study will come up with new findings to improve how the NHS meets patients’ needs and to guide future research._x000D_ _x000D_ We developed this study with input from:_x000D_ - young people with chronic pain and their families_x000D_ - pain charities_x000D_ - health professionals, e.g., doctors_x000D_ - and research experts. _x000D_ They told us that our study aim and questions are important and suggested ways to make the study better. They will work with us during the project to make sure that our findings are useful to children, their families, and the NHS. We will ask children and young people with chronic pain and family members to tell us how they think we should carry out the study and how they understand the findings of published studies._x000D_ _x000D_ Our findings should help to improve how services treat children’s chronic pain. This will help improve the lives and health of children and young people with chronic pain and their families. We will publish our findings widely to tell children and their families, health professionals, the NHS, the government, and other researchers about them. For example, we will make a three-minute animated film for children and young people, give presentations at conferences and online, hold meetings, speak on the radio, use social media (e.g. Twitter, Facebook, YouTube), and write reports, newsletters and articles for a range of audiences.

Lay abstract: Background: Chronic pain in childhood is widespread affecting at least 8% of children and young people in the United Kingdom (UK). It has substantial negative impacts on children’s lives and quality of life and leads to increased use of healthcare services and medication. Treating adolescent pain alone costs the UK National Health Service (NHS) around £4 billion a year. Provision of specialist children’s chronic pain services and multidisciplinary pain management is inadequate. We also do not know which outcomes children and families value. To design and deliver services and treatments which meet the needs of patients and their families, it is vital that we understand how children with chronic pain and their families experience chronic pain, pain treatments and services. Qualitative research addressing these urgent, important issues exists but must be synthesised to make sense of the evidence._x000D_ _x000D_ Aim: To conduct a meta-ethnography on the experiences and perceptions of children and young people with chronic pain and their families of chronic pain, treatments and services to inform the design and delivery of health and social care services, interventions and future research._x000D_ _x000D_ Review questions: 1. how do children with chronic pain and their families conceptualise chronic pain? 2. how do they live with chronic pain? 3. What do they think of how health and social care services respond to and manage their/ their child’s chronic pain? 4. What do they conceptualise as ‘good’ chronic pain management and what do they want to achieve from chronic pain management interventions and services?_x000D_ _x000D_ Design: meta-ethnography, a systematic, interpretive, qualitative evidence synthesis methodology ideally suited to informing the complex healthcare issues involved in children’s chronic pain. Review strategy: comprehensive searches of 13 bibliographic databases and supplementary searches, e.g. citation tracking and hand searching, to identify qualitative studies with children and young people aged 3 months to 18 years with chronic pain and their families. We will screen retrieved references against inclusion criteria agreed with our patient and public involvement group. Relevant studies will be quality appraised with the Critical Skills Appraisal Programme tool and purposively sampled to ensure a meaningful synthesis. The project team will extract studies’ conceptual data and analyse data with input from children and young people with chronic pain and their families. Analysis will result in a theory to inform service design and delivery. We will assess the confidence that NHS decision makers can place in our findings use the GRADE CERQual tool. We will integrate our findings with existing Cochrane systematic reviews on treatment effectiveness for children’s chronic pain._x000D_ _x000D_ Timeline: 24 months_x000D_ _x000D_ Dissemination, outputs & anticipated impact: We will disseminate widely to academic, lay, clinical and policy audiences via, for example, academic journals, conferences, social media, an infographic, mailing lists, professional networks, a podcast, webinar and a 3-minute animated film for children. Findings will inform: National Institute of Health and Care Excellence and Scottish Intercollegiate Guidelines Network clinical guidelines on children’s chronic pain; training of health and social care professionals; service, treatment and intervention design and delivery; and future research. Ultimately, this will improve the care provided and thus the health and quality of life of children with chronic pain and their families, and so reduce burden on patients and the NHS.

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