Article Text

PDF
Why collaborate with children in health research: an analysis of the risks and benefits of collaboration with children
  1. Deborah Bird1,
  2. Lorraine Culley2,
  3. Monica Lakhanpaul3
  1. 1Department of Medical and Social Care Education, University of Leicester, Leicester, UK
  2. 2School of Applied Social Science, De Montfort University, Leicester, UK
  3. 3General and Adolescent Paediatrics Unit, UCL Institute of Child Health, London, UK
  1. Correspondence to Professor Monica Lakhanpaul, General and Adolescent Paediatrics Unit, UCL Institute of Child Health, 30 Guilford Street, London WC1N 1EH, UK; m.lakhanpaul{at}ucl.ac.uk

Abstract

Involvement of service users in decision making, in both clinical and research settings, has become a central feature of many health and research funding policies in the last 15 years. Over the same timeframe, there has been an increasing focus on children's rights, promoted by the UN Convention of the Rights of the Child, which gives children a right to be involved in decisions that affect their lives. In a research setting, this has resulted in increased engagement of children in research, as opposed to relying on parents or carers to represent their children, and a shift from research on children to research with children.

In this article, we discuss collaboration with children under the age of 16 years in health research: what this means and why (or why not) to do it. The definition of collaboration is discussed and the lines among collaboration, involvement, participation and participatory research considered. The risks and benefits of collaboration are reviewed, both theoretical and evidence based, where evidence exists. The review ends with a look towards the future including the need for agreed definitions, better reporting of collaboration and other patient and public involvement activities with children to build up the much needed evidence base, the need for cost–benefit evaluations and, most importantly, the need for careful consideration as to whether collaborating with children is appropriate in each circumstance.

  • Health services research
  • Children's Rights
  • Paediatric Practice

Statistics from Altmetric.com

Request permissions

If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.