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 Recruitment
Date Entered: 2015/11/04
Date Edited: 2015/11/04