Children’s Involvement in Research—A Review and Comparison with Service User Involvement in Health and Social Care

Abstract

Changing conceptions of children and childhood have in the last three decades led to the increasing participation of children in social research and their involvement in active research roles. However, the benefits and challenges of this process are rarely discussed in relation to the wider literature on adult involvement, thus missing an opportunity to learn from potential commonalities or differences. In this paper, I argue for an explicit comparison between children’s involvement in research and (adult) service user involvement in health and social care research. The paper presents findings from a review of children’s involvement in research, first separately, and second, in comparison with themes from the literature on service user involvement. As the paper will illustrate, many of the themes manifest themselves in similar ways in the two areas of practice, leaving scope for the development of cross-disciplinary practice, reflection and conceptual development. Particular suggestions deriving from the paper are (a) a strengthening of organisational frameworks within Higher Education institutions to facilitate the involvement of diverse groups of children in research, (b) the development of a more systematic mechanism for reporting the involvement of children and young people in research and (c) cross-disciplinary and theoretical exploration of key concepts such as power and empowerment within the involvement context.

An umbrella review of reviews on challenges to meaningful adolescent involvement in health research

“…On the other hand, adolescents are experts in their own lives, and their perspectives provide valuable insights into their lived experiences. This raises concerns that their training can affect these lay perspectives, making their views too similar to professionals' viewpoints, and may alienate them from other adolescents 28 …”

“…3,52,66,67 They have busy lives due to school, extracurriculars, family responsibilities and social activities, which makes it challenging to schedule meetings, 3,67 especially during the day. 28 These demands may limit their ability to participate intensively in research activities, 27 such as the interpretation of findings. 68 The time available to spend on a project necessarily may limit adolescents' level of involvement with and contributions to projects.…”

“…33 Payment can sometimes be seen as contentious, 28 especially when adolescents are below the legal age of employment. 28,43 In some situations, compensating adolescents with alternative methods such as gifts has been equated with economic exploitation, especially when research is interfering with adolescents' income-generating work. 43…”

“…28,44,45 Adolescents tend to be seen as incompetent, disordered or asocial which is also a reported barrier to their meaningful involvement in participatory research. 28,44,45 Some researchers highlight that while there might be recognition of the validity of adolescents' voices in high-income countries, that is not the case in many low-and middle-income countries, especially in Africa. 43 To address this lack of awareness among researchers, there is a need for comprehensive training and guidance for researchers on involving adolescents in health research.…”

“…28,52 Meetings may be scheduled at a time that is, inconvenient for adolescents, 61 such as at lunch or after school 39 when they are hungry and tired. 28 Adolescents can feel intimidated around professionals or about working in unfamiliar places. 33,35 They may find some methods exhausting, 46,80 activities too dry 46,81 or the work not age-friendly.…”