We’re all very aware of including young people in our clinical work – it’s why we’re in child health – but what about making it happen in research? This blog post by Louca-Mai Brady, a researcher working in the field of CYP’s participation in health services and research, and NIHR INVOLVE advisory group member, briefly outlines why this matters and how it could be taken forward.
To provide some context: there is increasing recognition that health policy and services should focus on, or at least give due consideration to, children’s rights and the United National Convention on the Rights of the Child (CRC) by involving children and young people (CYP) in both the development and delivery of health services and in health and social care research (Fleming and Boek, 2012; Franklin and Sloper, 2005; Webb et al, 2009). The 2013 Chief Medical Officer’s Report states that the expectation for patient and public participation inherent in the NHS Constitution has no age limit and that CYP ‘should be encouraged and facilitated to participate in decisions about their own care and, more broadly, about the health and social care services and policies that affect them’. Such wider policy and legislative influences need to be taken into account alongside understandings from the field of childhood studies of CYP as social actors and childhood as a social space in which CYP can and do have agency (Alderson, 2013; Qvortrup et al, 2009), rather than being inherently vulnerable with their need for protection taking greater precedence than their right to be heard (Coyne & Harder, 2011, Freeman, 1998).
This focus on children’s rights, and the changing views of the nature of CYP and childhood has, to some extent, been reflected in increasing interest in CYP’s involvement in research (Kirby, 2004; Powell and Smith, 2009; Shaw et al, 2011), both as sources of data and through their active involvement in the planning and process of research. There is growing interest in research that evaluates the healthcare experiences of CYP (Clavering & McLaughlin, 2010), as well as CYP’s involvement in health and social care research (Fleming and Boeck, 2012; INVOLVE). Research that actively involves CYP in contributing to how healthcare and other experiences are explored, should lead to research, policies and services that better reflect CYP’s priorities and concerns (Brady et al, 2012; Fleming and Boeck, 2012).
The role of adults in this involvement also needs to be considered, including the role of parents and carers as gatekeepers, and facilitators of many CYP’s participation (Coyne, 2008); but also in their own roles as users of services. The adult/child dynamic with researchers and CYP involved in research also adds another dimension to the debates around power and public involvement (Moules, 2005; Boeck and Fleming, 2012).
Researchers working in this area (see blog posts on meetings of researchers in the west of England and at the recent INVOLVE conference) have identified a need to share practice and develop an evidence base. To that I would add the need to also consider how we can best involve a range of children and young people in health and social care research, including those who are less frequently heard. The new Research Involvement and Engagement journal provides an exciting opportunity to address all these areas, as does the next NIHR INVOLVE newsletter (available in spring 2015), which will focus on CYP’s involvement. The fact that this is an area in which there is growing interest is great, as is the increasing awareness that involvement of CYP in research is often different to the involvement of adults, the question now is how we move forward in a way that is meaningful for all involved, effective and sustainable in the face of ongoing change and increasingly limited resources.
Postgraduate Researcher and independent consultant
Faculty of Health and Applied Sciences (HAS)
University of the West of England
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