Background: Childhood chronic pain is a worldwide public health issue. We conducted a qualitative evidence synthesis using meta-ethnography, with patient and public involvement (PPI) in all review stages. We investigated the experiences and perceptions of children with chronic pain and their families of chronic pain, pain treatments and services. PPI in every stage of a systematic review or evidence synthesis is rare. We will co-present with young people with chronic pain and parents.
Objectives: To involve children with chronic pain and their families and other key stakeholders in the meta-ethnography study design, analysis, interpretation and dissemination to ensure salience of findings. To describe involvement methods and impact.
Methods: Thirty-three stakeholders, including children, parents, health professionals and third-sector representatives, took part as co-producers via workshops, meetings, email, and conference calls. They participated in developing the grant proposal, finalising the review protocol, making decisions about sampling and organising studies for synthesis and interpreted and disseminated findings. We created innovative methods to involve children and stakeholders in analysis and interpretation, e.g., we conveyed screening results using infographics and developed cartoons to show preliminary findings to facilitate discussion during workshops to clarify, interpret and/or address gaps in data.
Results: Stakeholders suggested additional sources for the literature search strategy, decided we should include non-UK studies in the sample, and agreed that we should group studies by pain condition for synthesis. PPI provided different perspectives on and interpretations of ambiguous data, challenged the review team’s interpretations and filled gaps in data based on their experiences. A young person with chronic pain co-presented at a nursing conference, and PPI co-developed an animated cartoon to disseminate findings to children and young people.
Conclusions: We believe this is the first meta-ethnography to involve patients, parents and other stakeholders as partners in every stage from inception to dissemination. Their involvement in study design, analysis, interpretation and dissemination ensured the relevance and usefulness of the review outputs, clarified ambiguous (and controversial) findings and was key to producing meaningful findings to enhance policy and practice.