Involving those who are the focus of research has been found to have a positive impact on what is researched, how research is conducted and the impact of research findings (e.g. Staley, 2009). There is currently little written about the involvement of children and young people (CYP) in health and social care research, but this is an area in which there is a growing interest (see post on People and Research West of England events and my recent post on this topic). This page includes information and resources related to young people’s involvement in research, and new additions are very welcome.
Involving those who are the focus of research is something I have been interested in for much of my career. In a chapter I co-authored with on CYP’s involvement in social care research we suggested that:
“…research which actively involves young people, if used to inform decision-making or policy formulation, could lead to policies and services that reflect CYP’s priorities and concerns, although evidence for this is currently limited. In organisations where participation is not already developed, involving CYP in research could help to promote a more participative culture.” (Brady et al, 2012: 230-231. Full reference below).
I am currently supporting the involvement of children and young people in a pilot study, and this involvement is also the focus of one of my PhD case studies. Using a process of critical inquiry to reflect with the researchers and young people involved in the study, I am exploring how CYP’s views, needs and priorities are taken into account, how they are involved in negotiation and dialogue, and whether this involvement in health research does in fact lead to more relevant policy and practice. Some emerging findings from this work were presented at the 2014 INVOLVE conference
NIHR INVOLVE. Information, resources and links on involving children and young people in health, public health and social care research
The INVOLVE Summer 2009 newsletter featured several articles on involving children and young people in research and the Spring 2015 edition is focused on young people’s involvement, including more articles by some of the groups listed below: www.invo.org.uk/news/involve-newsletters/
Participation Works. Information on children and young people’s participation including downloadable versions of NCB and PEAR guidelines, ‘how to’ guides including ‘creative methods’ and ‘reward and renumeration’, and a guide and toolkit for evaluating participation with children and young people
Groups and resources
NIHR Clinical Research Network: Children – Young Person’s Advisory Group. Includes information on Generation R, a 2013 national event on young people’s involvement in the design and delivery of clinical research
The National Young People’s Mental Health Advisory Group. The group was established in January 2014 by the NIHR Clinical Research Network: Mental Health. Includes information on their 2015 event, Young People ReThinking Mental Health Research.
DECIPHer. DECIPHer is the Centre for the Development and Evaluation of Complex Interventions for Public Health Improvement. They have a group of young people (ALPHA) aged 14-21 who advise researchers on public health topics and research:
National Children’s Bureau (NCB). Includes information on their young researcher’s group, a 2011 conference on young people’s involvement in research and projects involving children and young people including:
- Guidelines for research with children and young people
- The PEAR Project – a (now completed) project involving young people in public health research, including a conference and guidance for researchers
- VIPER young researchers – a project involving young disabled people in research.
Children’s Research Centre. The Open University Children’s Research Centre aims to enable children and young people to have a research voice in society and to make valuable contributions to knowledge from their perspectives. Includes information on their book: ‘How to Develop Children as Researchers’:
National Youth Agency Young Researchers Network. Toolkit to support young people-led research
Children’s Rights Alliance for England (CRAE). Publications on children’s participation in decision-making and rights.
Alderson, P. (2001). Research by children. International Journal of Social Research Methodology 4(2), 139-153.
Brady, L.M., Davey, C., Shaw, C. and Blades, R. (2012). Involving children and young people in research – principles into practice. In Social Care, Service Users and User Involvement: building on research, ed. Beresford P and Carr S. London: Jessica Kingsley
Brady, L.M. and young co-authors (2011). Involving young people in research: making an impact in public health. In Critical Perspectives on User Involvement, ed. Barnes M and Cotterell P. p159-168. Bristol: Policy Press.
Brownlie, J., Anderson, S. and Ormston, R. (2006). Children as researchers. Edinburgh: Scottish Executive Education Department
Fleming, J. (2010). Young people’s involvement in research – still a long way to go? Qualitative Social Work, 10(2), 207–223
Fleming J, and Boeck, T (eds). (2012). Involving Children and Young People in Health and Social Care Research. London: Routledge
Franks, M. (2011). Pockets of Participation: Revisiting Child-Centred Participation Research. Children & Society, 25(1), 15–25.
Jamal, F., Langford, R., Daniels, P., Thomas, J., Harden, A. and Bonell, C. (2014). Consulting with young people to inform systematic reviews: an example from a review on the effects of schools on health. Health Expectations.
Kellett, M (2005) How to Develop Children as Researchers. London: Paul Chapman.
Kirby, P (2004) A Guide to Actively Involving Young People in Research: For researchers, research commissioners, and managers. Eastleigh: INVOLVE.
McCabe, A. and Horsley, K. (2008). The Evaluator’s Cookbook: Exercises for participatory evaluation with children and young people. London: Routledge
PEAR (2010). Young People in Research: How to involve us. London: NCB.
Save the Children (2000) Young People as Researchers: A learning resource pack. London: Save the Children.
Shaw C, Brady, LM and Davey C (2011). Guidelines for Research with Children and Young People. London, NCB.