Children's participation in health research: from objects to agents?

Abstract

Inclusion of children's perspectives can be achieved, at varying levels, in each approach (on, with and by) examined here. Although claims to authority around including children's perspectives may appear to hold more credence when children have directly participated in the research, there may be times when this is neither possible nor appropriate. Researchers are challenged to be open and reflexive about ways in which children are engaged with, incorporated in and represented across the many stages of research. Whichever approach is taken, ethical issues and notions of equity remain problematic. This point holds particular resonance for ways in which ethics around children may be considered in National Health Service ethics governance processes.

Children’s experiences of acute hospitalisation to a paediatric emergency and assessment unit – A qualitative study

“…Since then there have been many attempts to ensure children are listened to (Department for Children, 2004;Department of Health and Children, 2000;Joint Commission Public Policy Initiative, 2001). In searching the literature on hospitalised children's experiences, several studies showed that children were still not being involved in fundamental practices such as decision making that impinge on their care (Clavering & McLaughlin, 2010;Coyne, 2006;Söderbäck et al, 2011). As a result of this there is a growing interest for research on children's own perspective of hospitalisation (Salmela et al, 2010;Söderbäck et al, 2011) Children are now seen as social, reflective actors instead of passive objects in social structures and processes (Matthews, 2007).…”

Participatory methods in pediatric participatory research: a systematic review

“…However, stages of development and levels of maturity differ not only in age but also in time and in place. Race, ethnicity, social class, and religion are part of who children are and might help to determine which method could be suitable for them (11). Second, the choice for one of the available participatory methods not only depends on child characteristics but also on the data that should be obtained.…”

“…A general aim is to "bridge the gap between the world as it is lived and the world of scientific study and dispassionate explanation" (9,11). Other reported benefits are based on experiences of children and researchers: participatory research is a positive experience for both children and researchers (10).…”

“…Finding appropriate ways in their hundred languages to communicate with them is crucial (11). Lack of suitable methods can exclude children unable to use the available methods (12).…”

In My Shoes – Validation of a computer assisted approach for interviewing children

“…The aim of the interviews is most often to explore the child's experiences, thoughts, or opinions in order to gain knowledge about the child's perspective (Clark, 2005;Clavering & McLaughlin, 2010;National Board of Health and Welfare, 2015).…”