Involving children and young people in the creation of dissemination materials for a complex evidence synthesis of interventions to improve the mental health of children and young people with long term physical conditions

Article type
Authors
Thompson-Coon J1, Walker E2, Shaw L1, Nunns M1, Moore D1, Smalley A1
1University of Exeter Medical School
2Great Ormond Street Hospital for Children NHS Foundation Trust
Abstract
Background: Involving end-users of research in communicating evidence is believed to result in more effective knowledge translation. We recently completed a complex evidence synthesis of interventions to improve the mental health of children and young people with long-term physical conditions and involved a group of children and young people throughout the process.

Objectives: To reflect on activities undertaken with the children and young people to: 1) communicate the findings of the research, and 2) share their experiences of being involved in the project.

Methods: We discussed potential dissemination options throughout the project; exploring how and where individuals sought this type of information. As a result of these discussions, we undertook five activities with the children and young people:
1) two podcasts – one to communicate the findings and one to share experiences of being involved in the project;
2) a conference presentation;
3) a blog post;
4) contributions to the final report; and
5) a plain language summary for distribution to interested organisations.
Parents were also involved in some of these activities.

Results: The podcasts are available on the project website; we have had multiple requests to share with relevant organisations on publication of the final report. Two young people presented a poster and delivered an oral presentation at the INVOLVE at 21 conference in November 2017 and shared their reflections on this experience in a blog post. We included an afterword from the children and young people in the final report. In our final Children and Young People’s Advisory Group meeting, participants drafted a plain language summary of the findings both for inclusion in the final report and for distribution to relevant organisations.

Conclusions: We have an array of relevant and interesting communication materials co-produced by, and designed to appeal to, a key audience for our findings. Feedback from the children and young people and the research team suggests that these were enjoyable and worthwhile activities which helped contribute to a sense of meaningful involvement in the project.

Healthcare consumer involvement: Children and young people were involved at all stages. Feedback from the children and young people suggests that these activities helped contribute to a sense of meaningful involvement.