Mike: Hello, I'm Mike Clarke, podcast editor for the Cochrane Library. Cochrane has produced more than a dozen systematic reviews of the effects of interventions that might help children who have chronic pain and their parents. In October 2023, these were added to with a review of qualitative research that had explored the experiences and views of children and their families about chronic non-cancer pain and pain services and treatments. In this podcast, Roses Parker, Cochrane's Commissioning Editor, talks with lead author Emma France, an associate professor in health research at the University of Stirling in the UK, about the review and its findings.

Roses: Hello Emma, first of all, could you tell us a little about children's chronic pain. What is it and how does it affect children?

Emma: Hello Roses. Chronic pain is pain that has lasted for at least 12 weeks and it affects 20% to 35% of children and young people, causing moderate or severe disability for around 5% of children. It causes difficulties with many aspects of the child's life, including their relationships and school attendance, and leads to increased use of health services.

Roses: So, why is it important to have a review of the qualitative research on children's chronic pain and its management, to sit alongside the Cochrane reviews of the effects of interventions?

Emma: Firstly, those reviews have identified a severe lack of high-quality research to inform chronic pain management in children and we know that pain in children is often undertreated. In many countries, there are few services for managing children's chronic pain and current services are inadequate. But, if a child's chronic pain is not successfully treated, it can continue into adulthood and bring lifelong problems.
So, to help people to understand more about children's chronic pain and, in doing so, to help improve health care and direct future research, we took a different approach to those reviews of interventions. We set out to bring together the research which asked children with chronic pain and their families about what it is like to live with chronic pain, their experiences of health care, and what they want to get from treatments.

Roses: Did you find the evidence you needed, and what does it say about experiences of chronic pain and its management?

Emma: We included findings from 43 studies involving more than 600 people, mainly children and mothers. The studies looked at many different types of chronic pain and were mainly exploring what it's like to live with chronic pain. There were very few studies about experiences and views of treatments and services, and few studies that looked at the experiences of brothers and sisters or fathers of children with chronic pain, children under five years old or those with learning disabilities. There was also a lack of research from low- and middle-income countries.

Roses: Turning to the studies that have been done, what do they tell us?

Emma: One main finding is that chronic non-cancer pain in children has serious negative impacts on the whole family and family life. It affects their well-being and autonomy, their social lives and relationships; education and employment. Another key finding, is that families have difficulties when they are trying to access and get support from health services. Some families repeatedly visit health services trying to get a diagnosis and cure.
Often families are left to deal with chronic pain on their own and, over time, some children and families give up hope of getting effective pain-relief.
We also found that prescribed pain management strategies can be time-consuming, repetitive, painful or have other unpleasant side effects and disrupt family life even more.

Roses: Do the studies provide any information on what children and their families think would make a good service or treatment?

Emma: Yes. Parents and children want healthcare professionals, such as doctors and nurses, to listen to and understand the impact that chronic pain has on them and their family life. They ideally want treatments that cure the pain. If that's not possible, then strategies to help them live well with pain would help. Children and their families also want healthcare professionals to tell them what any tests and treatments are for and tell them early on how likely a cure is. Finally, treatments tailored to families' preferences and needs that don't worsen the impact on the whole family and its well-being would be more acceptable to families.

Roses: Overall, what's your take-home message about children's chronic pain management?

Emma: We need to develop new ways of managing children's chronic pain that are tailored to children and support the whole family. We should integrate support and care across health and social care services, the community, and schools to address all the impacts of chronic pain on the child and family.

Roses: Thanks Emma. If people would like to read the review, how can they get hold of it?

Emma: Thanks Roses. It's available online. If people go to www Cochrane Library dot com and type 'meta‐ethnography AND children with chronic pain' into the search box, they will see our review near the top of the list.