CAM-Pain Research Programme

We aim to learn what happens when children with painful joints and muscles visit their doctor. We also want to discover what children and parents think about their pain and clinic visits. We will develop and test a new package of information and self-management support for children and their parents.

We talked to children and young people (CYP) prior to grant application, and they provided input on the questions and proposed design. Once funded, we have involved CYP in the specifics of the design, definitions and categories to use for analysis, study materials and adverts for recruitment. We plan to work with them on implementation and dissemination too.

In our study materials, we wanted to have pictures of different types of consultations. The CYP gave feedback on the pictures, and helpful suggestions, and we changed the pictures as a result to make them more representative of real-life primary care consultations.

One specific example – we started out saying we were studying children and adolescents, until a PPIE member asked what we meant by an adolescent. It became clear that it was a term they didn’t use and didn’t fully understand. We modified all our materials to remove the term adolescent and talk about children and young people instead. This is a basic but fundamental change that wouldn’t have happened without PPIE.

We have analyses of large datasets in our plans, and we were able to get helpful input from CYP on the age groups that would be most appropriate, and the types of outcomes that would be relevant to them.

We went to two Young Person’s Advisory Groups during the development of the work, prior to grant application. Once the study began, we recruited a group of children and young people with experience of musculoskeletal pain to work with us. We recruited through existing contacts and adverts.

We had PPIE support funded through the project, to ensure that the CYP were properly supported by people with experience of working with both patients and the public, and with researchers.

Our study materials are currently being used, and they have provoked lots of helpful discussions.

We have changed the terminology and language used in all our study materials to better reflect language used by CYP.

We have carried out our analyses using age groups proposed by the CYP PPIE groups.

Get PPIE involvement as early as possible, ask open questions and really think how you can change your plans as a result of their input.

It was difficult to recruit CYP to the PPIE group, so we had to advertise more widely and ask through a lot of avenues.