https://orcid.org/0000-0002-3794-2902
Playing with friends is what I like to do most. It makes me happy to play games, talk and laugh together. Sometimes we act like we’re playing in a movie. I think I will be an actress later.
Children with disabilities are no different from their typically developing peers: they want to play, have fun with friends and family, and dream about the future. As professionals, we are deeply committed to WHO’s ICF concepts – especially “participation,” or involvement in meaningful life situations. Children with disabilities generally face challenges to participate, as illustrated in a large study in this issue [Citation1]. There is considerable variation in these challenges, but the constellation of forces influencing participation increasingly highlights the centrality of the role of environments [Citation2,Citation3].
This collection of articles focuses on interventions, outcomes and ingredients related to optimising participation. In developing interventions, two essential features are highlighted. First, participation for children and youth must be considered with a lifespan perspective, acknowledging the ever-changing needs, motivations, and environments of every individual. This developmental reality goes hand-in-hand with our constantly evolving understanding of involvement and engagement in meaningful activities. Second, we must recognise the ecological reality that there are many players whose roles in children’s lives influence the challenges and the opportunities for participation.
These ideas are illustrated through a range of studies and approaches, from ethnography and qualitative interviews to an RCT and a systematic review. These studies address (in great detail) questions not just about what works, but also how and why things do or do not work. Despite differences in contexts, participants, and focus, there is a clear, common message: for participation interventions for children and young people, there is no room for “one-size-fits-all-or-many” thinking.
First, individual preferences, needs, and dreams are the driving forces for participation [Citation1,Citation4–9]. Second, the complexity of the environment is emphasized: the individual’s social context (e.g. family, friends), the broader community (e.g. school, health care, leisure), and systems and policies, all exert varying degrees of influence [Citation4–8]. Third, participation is an essential driving force of a person’s development throughout life, providing opportunities to develop autonomy, to feel connected, and to experience mastery [Citation1,Citation4,Citation6]. And finally, initiating and sustaining participation cannot be “solved” by health care professionals, leisure organisations, or researchers alone [Citation8,Citation9].
Together, these findings emphasise that we need to move away from siloed thinking, and work together using a “relationship-centred” approach to problem-solving [Citation6]. This will allow us to collate knowledge from various fields and contexts, and “translate” this knowledge into actionable strategies. We have an opportunity – and a responsibility – to share clear messages that reach the environments of children and young people.
What does this mean for implementation? The best way to optimise participation is to value (and act upon) the importance of partnerships. Central to this are the experts with lived experience, namely the children, youth, adults and their families. Ask them, listen to them, work with them!
Disclosure statement
No potential conflict of interest was reported by the author(s).
References
- Bentzen M, Malmquisy L. Differences in participation across physical activity contexts between adolescents with and without disability over three years: a self-determination theory perspective. Disabil Rehabil. 2021. DOI:https://doi.org/10.1080/09638288.2021.1894489.
- Maciver D, Rutherford M, Arakelyan S, et al. Participation of children with disabilities in school: a realist systematic review of psychosocial and environmental factors. PloS One. 2019;14(1):e0210511.
- Wintels SC, Smits DW, van Wesel F, et al. How do adolescents with cerebral palsy participate? Learning from their personal experiences. Health Expect. 2018;21(6):1024–1034.
- Miklos M, Jahnsen R, Nyquist A, et al. “Here we are together, at home you are alone” – social interactions and personal engagement during a group-based rehabilitation program for young adults with disability. Disabil Rehabil. 2021. DOI:https://doi.org/10.1080/09638288.2021.1921060.
- Arfa S, Solvang P, Berg B, et al. Participation in a rehabilitation program based on adapted physical activities in Norway: A qualitative study of experiences of immigrant parents and their children with disabilities. Disabil Rehabil. 2021. DOI:https://doi.org/10.1080/09638288.2021.1907454.
- Willis C, Elliott C, Reid S, et al. ‘Capturing the magic’: identifying the active ingredients of a physical activity participation intervention for children and youth with disabilities. Disabil Rehabil. 2021. DOI:https://doi.org/10.1080/09638288.2021.1907458.
- King G, Mcdougall C, Kingsnorth S, et al. Program factors influencing parents’ engagement in a friendship-making intervention for youth with disabilities. Disabil Rehabil. 2020. DOI:https://doi.org/10.1080/09638288.2020.1861115.
- Shields N, Willis C, Imms C, et al. Feasibility of scaling-up a community-based exercise program for young people with disability. Disabil Rehabil. 2021. DOI:https://doi.org/10.1080/09638288.2021.1903103.
- Kilgour G, Adair B, Stott NS, et al. Do physical activity interventions influence subsequent attendance and involvement in physical activities for children with cerebral palsy: a systematic review. Disabil Rehabil. 2021. DOI:https://doi.org/10.1080/09638288.2021.1909151.