Methods and tools to support participation-focused practice

Participation-focused practice reflects a paradigm shift in interventions for children with disabilities or long term health conditions, as the issue to be addressed becomes participation in everyday activities rather than problems with body function. Participation-focused practices (i.e. practices aimed to enhance participation in everyday activities) require methods and tools to be implemented. This collection involves two methods papers focusing on the assessment of experiences in everyday life: the experiences of stakeholders promoting adolescents’ participation [1] and the subjective participation experiences of children themselves [2]. Four other papers deal with the development of tools for different purposes: a knowledge translation roadmap to enhance stakeholders’ use of participation evidence in practice (P-KT) [3], a parent-proxy tool to capture children’s participation and involvement (FUNDES-Child) [4], a tool to enhance practitioners’ understanding of children’s participation in everyday life (CMAP) [5], and an app for registering accessible community-based leisure organizations [6].

One important message in this collection of papers is that participation-focused practices require the active involvement of stakeholders (e.g. children, families, practitioners, decision makers) across various aspects of the intervention process, including identifying participation restrictions, setting meaningful participation goals, evaluating the effects of participation interventions, and encouraging the uptake of participation evidence in practice. The papers consider participation-focused methods/tools from a socio-ecological perspective, including the organizational level [1,3,6] and encounters between the child and practitioners [2,5]. The papers highlight the importance of stakeholders’ active involvement, motivation, and self-efficacy, pointing to the need for research on what are considered to be key psychosocial drivers of participation.

Another important message is that children with disabilities can provide reliable information and be active participants when an assessment process is adapted to them [2,4,5]. The active involvement of children, families, and practitioners is necessary to ensure that participation-focused activities are meaningful and contextually relevant for children. The development of measures that can be flexibly administered is an important future research direction, as is the development of measures that capture fluctuating levels of involvement/engagement ‘in-the-moment’, as discussed by Simpson [2].

A third key message is the importance of stakeholder collaboration. Several of the methods and tools are designed to provide insights into the experiences, strengths, and preferences of children, thereby enhancing the provision of family-centred care. The key idea here is the importance of individualizing and tailoring methods and tools to meet the needs and preferences of children and families.

Taken together, the three messages indicate that participation-focused practice needs to build on the active involvement/engagement of children and parents, not only in the interventions that concern them personally, but also in providing input on how organizations and stakeholder groups should work and collaborate. This requires explicit methods for how to involve children, parents, practitioners, and others in the process [1,2]. In addition, participation instruments need to be designed so that their content and layout invite children’s involvement [4]. Collaborative methods and approaches to tool development are needed to ensure their meaningfulness and relevance, as exemplified by the papers in this collection.

Disclosure statement

No potential conflict of interest was reported by the author(s).