Evidence Library

Title: Involving disabled children and young people as partners in research: a systematic review
Author: Bailey, S., Boddy, K., Briscoe, S. and Morris, C.
Date Published: 2014
Reference: Child: care, health and development, doi: 10.1111/cch.12197 [Epub ahead of print]
Are service users or carers authors: Yes

Abstract: Aim: To find out what impact the involvement of disabled children and young people (DCYP) has on research and on the children themselves. Methods: A systematic literature review. Findings/ recommendations: The positive impacts of involvement on DCYP include increased confidence, self-esteem, responsibility and independence, obtaining new skills and knowledge, feeling respected and valued, and helping others. The negative impacts on DYCP include distress from hearing about other people’s lives, feeling intimidated by the process, losing confidence and interest if overwhelmed, feeling disillusioned if involvement is tokenistic. The positive impacts on research include better research questions, more age appropriate and accessible information, an approach that ensures the protocol and interventions are more acceptable to DCYP, enhanced data collection through peer interviews, and contributing a unique perspective to data analysis. The negative impacts are that greater resources are required and the research takes longer. However, overall the authors conclude that the quality of the reporting of involvement is so low, that is not possible to draw strong conclusions about the best approaches to involvement to ensure positive impacts.

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Categories: health
public health
social care
Identifying topics, prioritising and commissioning
Designing research
Undertaking research
Analysing and interpreting
impact on research
impact on service users involved
impact on researchers
impact of public involvement
journal article

Date Entered: 2015/11/04

Date Edited: 2015/11/04

Additional Info: