Involving disabled children and young people as partners in research: a systematic review

Abstract

Children and young people can be valuable partners in research, giving their unique perspectives on what and how research should be done. However, disabled children are less commonly involved in research than their non-disabled peers. This review investigated how disabled children have been involved as research partners; specifically how they have been recruited, the practicalities and challenges of involvement and how these have been overcome, and impacts of involvement for research, and disabled children and young people. The INVOLVE definition of involvement and the Equality and Human Rights Commission definition of disability were used. Relevant bibliographic databases were searched. Websites were searched for grey literature. Included studies had involved disabled children and young people aged 5-25 years in any study design. Reviews, guidelines, reports and other documents from the grey literature were eligible for inclusion. Twenty-two papers were included: seven reviews, eight original research papers, three reports, three guidelines and one webpage. Nine examples of involvement were identified. Recommendations included developing effective communication techniques, using flexible methods that can be adapted to needs and preferences, and ensuring that sufficient support and funding is available for researchers undertaking involvement. Positive impacts of involvement for disabled children included increased confidence, self-esteem and independence. Positive impacts for research were identified. Involving disabled children in research can present challenges; many of these can be overcome with sufficient time, planning and resources. More needs to be done to find ways to involve those with non-verbal communication. Generally, few details were reported about disabled children and young people's involvement in studies, and the quality of evidence was low. Although a range of positive impacts were identified, the majority of these were authors' opinions rather than data. There remains scope for methodological research to inform appropriate approaches to public and patient involvement in childhood disability research.

Using children and young people as advocates to inform research design

“…Bailey et al (2014) suggest that children with disabilities are less likely to be involved in research, they encourage greater efforts to include advocates with communication difficulties. Both advocates informing the primary researcher's study have communication difficulties which led to important design considerations.…”

Participatory methods in pediatric participatory research: a systematic review

“…Benefits for the children are their increased empowerment (9), self-confidence, and self-esteem (6,10). Also knowing that their views and opinions are listened to and respected and that they can make a difference or help other children and in getting the opportunity to share frustrations and appreciations were reported as beneficial effects of participatory research (12). Finally, children are more likely to develop an on-going and effective dialogue with adults (2,6).…”

“…When participation is sought, but does not lead to any changes in policy or practice, or children and young people are not informed well, it can cause disillusion (3). This may even result in a lack of trust in general, which might have an impact on future collaboration in research and in medical care and treatment (12). Next to disillusion, there is also a risk of overburdening children, especially when it comes to remembering and reviving sensitive issues or situations.…”

“…Next to disillusion, there is also a risk of overburdening children, especially when it comes to remembering and reviving sensitive issues or situations. Learning about other's lives and views may cause distress in children (12).…”

“…An important issue when children are asked to participate in focus group discussions is confidentiality, which cannot be assured when information is shared with other children. Children and their parents should be aware of this (12).…”