Involving children and young
 people in health research

    Key points

  • Involving children and young people is not the same as involving adults and requires different considerations
  • Children and young people have a right to be involved in research that affects them
  • Children and young people and the research conducted benefits from effective involvement
  • Think clearly about exactly why you want to involve children and young people

“It’s only logical for us to shape the world we live in”

Involving those who are the focus of health research has been found to have a positive impact on what is researched, how research is conducted and the impact of research findings on services and in the lives of those involved (Staley, 2009). By making use of people’s knowledge, lived experience, and networks, the argument is that researchers can provide more relevant, higher quality research that is more widely communicated (Stewart and Liabo, 2012).

Research which actively involves children and young people, if used to inform decision-making or policy formulation, should lead to policies and services that reflect children’s priorities and concerns and enhance the opportunity for the best possible health outcomes.

There are two main arguments for involving children and young people in research:

  1. Under United Nations Convention on the Rights of the Child, children have rights to both the highest possible standards of both healthcare and to have a say in matters that affect them, including health research.
  2. Involvement has benefits for the children and young people participating, for research, and for the services and policies that draw on this research evidence.

What is different about involving children and young people?

A boy tries out VR

Involving children and young people is not the same as involving adults and requires different considerations. Methods and techniques used in adult involvement cannot necessarily be translated to children and young people. On a practical level children and young people’s availability tends to differ from that of adults (e.g. they can only meet during school holidays or at weekends, and may not be available during exam periods), they may be involved for shorter periods of time (e.g. when they go off to further education or employment or are no longer deemed ‘young people’).

The involvement of children and young people in research also often includes adults, either parents and carers or professionals, who may as act as ‘gatekeepers’ and both enable and potentially limit how and when children and young people can be involved in research. So, when planning involvement, it is important to consider how and when you need to engage gatekeepers in order to support the engagement and retention of children and young people.

References and further reading