Involving children and young people in supportive cancer care research: the value of FDS grant funding and charitable partnerships

Introduction

Involvement of children and young people in research has a multitude of benefits for children, researchers and the quality of the research itself. Despite the benefits of involvement, this is not always completed or reported in practice.

Methods

This paper looks at the involvement of children and young people during a research study exploring the acceptability of photobiomodulation for mucositis management. It considers the importance of costing involvement into grant funding, and the value of charitable partnerships in conducting research with patient and public involvement.

Results

Children and young people with experience of cancer, and their parents, were involved at the stages of grant application, research design, data analysis and dissemination. Involvement of families resulted in changes to inclusion criteria, plain language summaries and participant information documents. They provided insight into data analysis, and designed and filmed co-created video outputs to support acceptability of the treatment, dissemination of the research and research involvement of other children. Involvement was supported both practically and financially by charitable partnership with the Candlelighters children’s cancer charity as well as research grant funding from the Royal College of Surgeons of England’s Faculty of Dental Surgery.

Conclusions

Child and parent contributors shaped the research project, resulting in changes to the study design, data analysis and co-creation of video resources. Charitable partnership and flexibility of involvement supported diversity in the context of paediatric cancer research. Researchers should consider what they can contribute in return to child contributors and charities who provide support.