Children and young people’s participation in developing interventions in health and well-being: a scoping review

Abstract

BackgroundGreater interest is being shown in participatory approaches, especially in research on interventions that concern children and young people’s health and well-being. Although participatory approaches have user involvement in common, they differ in terms of the explicit guidance on how to actually involve and engage children and young people in health research. The aim of this scoping review was to systematically map recent research involving children and young people in the development of interventions targeting issues of health and well-being.MethodsAn interpretative scoping literature review based on: a scientific literature search in (health and social science) databases, reference lists, a manual search in key journals and contact with existing networks was conducted. A total of 4458 references were identified through the literature search, of which 41 studies published between 2000 and 2017 were included in the review. The target population was children and young people under 25 years old. Level of participation was categorized according to Shier’s Pathways to Participation Model.ResultsThe review showed that participatory approaches were most often used in the development of interventions in school settings and in community and healthcare settings and on issues concerning support in lifestyle or in managing illness or disease. The level of participation varied from children and young people taking part just as active informants, through stages of greater participation both in quantitative and qualitative terms, to children and young people becoming an active agent involved as a co-researcher where the research process was shaped by views of a higher level of mutuality. Most of the studies were categorised at a medium level and only three studies were judged to involve the children and young people at the highest level.ConclusionsThis scoping review showed that work remains in enabling children and young people to influence the development of interventions targeting health and well-being. In relation to level of sustainability in the interventions, it is relevant that goals, strategies and processes are formulated by those who can gain from the interventions. Participatory approaches aiming for a higher level of participation where children and young people work together with the researchers in partnerships are thus warranted.

Co-Creating a Virtual Alcohol Prevention Simulation with Young People

“…Furthermore, the nature of the students' involvement in the design of VR FestLab ensured a high level of influence on the design and production tasks, which increased students' self-efficacy. This corresponds with several studies that argued that participatory research can empower participants to influence and generate novel ideas that will improve the creation of health products and services as well as their implementation in practice [4,17,27]. Empowerment became evident in this Living Lab process, where game design students took initiative and delivered the new mini-game components further enhancing the VR FestLab product.…”

“…Participatory research often strives to increase the likelihood of developing more effective and efficient interventions that more precisely address health and well-being issues among the target group [27]. Studies have shown improvements in products developed in a co-creation process, especially on implementation and usability of the product or service [1].…”

Developing communication support for interaction with children during acute radiographic procedures

“…In order to grade the level of participation in the analysis, the data were categorized in accordance with Shier's Pathways to Participation Model. 19 A participatory design was used 20 which in this study included four phases conducted in succession to each other. Those phases are outlined below and shown in Fig.…”

“…Limitations of the study should be considered, such as the small sample size, which makes it difficult to generalize the findings. However, one of the strengths of the present study was that children with and without disabilities were included as co-designers, 20 supported by both parents and radiographers. There is evidence that involving end-users (in this study the children, their families and radiographers) facilitates improving the dissemination of research findings within the community (Cooperative Research Centre for Living with Autism, 2016).…”

Clarifying the mechanisms and resources that enable the reciprocal involvement of seldom heard groups in health and social care research: A collaborative rapid realist review process

“…While there is no consensus on one definition for public and patient involvement (PPI) nor in relation to the terminology used (e.g engagement and involvement are often used interchangeably or with different connotations), there is a growing abundance of academic and grey literature on the merits, impact and experiences of PPI in health and social care research . In the UK, the National Institute for Health Research (NIHR) has set up the platform INVOLVE to promote and share best practices for PPI.…”