https://orcid.org/0000-0001-9055-3554
This special edition of participation research draws on the expertise of those who were to attend a participation-focused symposium in the beautiful mountains of Norway in June 2020. Because COVID-19 prevented our meeting, we invited our presenters to submit their work to this edition. The result is a rich collection of research findings from Norway, Sweden, Finland, the Netherlands, Serbia, Canada, USA, and Australia – along with other international research groups.
The focus of this edition was informed by the themes of the symposium: Capture the Magic: Participation for all, that aimed to celebrate the 50th Anniversary of Beitostolen HealthSports Centre – a Norwegian rehabilitation centre providing group-based participation in adapted physical activity as the intervention. In addition, this symposium was a planned sequel to P3M: Participation Motives, Methods, Measures, (Melbourne, 2017), that brought international researchers together and formed the basis of many ongoing collaborations.
The edition comprises 18 papers addressing three themes, each prefaced by an editorial by our intended keynote speakers [Citation1]: factors influencing participation, especially long-term outcomes [Citation2], evidence about participation intervention ingredients, and [Citation3] methods and tools for implementing participation-focused practices. Across the research projects, the participation settings are broad, and importantly they are everyday settings, not clinical. The studies included diverse disability populations, consistent with evidence that diagnosis is not a key determinant of participation outcomes.
The evidence in this collection reinforces the need for a life span perspective and for working with, not doing to or for, children and families. Participation focused practice must start early in life. Because contexts are crucial, empowering families [Citation1,Citation2] through providing information; supporting their preferences; and enabling involvement in daily settings by solving problems related to access, equipment and other accommodations, is needed. The approach requires genuine partnership with children, youth, families and with community organisations to build capacity within mainstream settings: it requires individual and systems level approaches [Citation3,Citation4].
The involvement construct remains under-researched and requires further attention [Citation5]. Meaningful, culturally relevant outcome measures [Citation6], used in intervention studies where participation is the primary dependent variable, will enhance our knowledge. Knowledge of the reciprocal relationship between meaningful participation and physical and mental health [Citation7] reinforces the need for interventions to sustain attendance and involvement in important activities for children with disabilities throughout their lives. Key recommendations from these papers indicate that participation outcomes are dependent on how (i.e., through supportive relationships and knowledge sharing) [Citation8,Citation9], where (in real-life contexts) [Citation10] and what (collaborative, tailored, mentored/facilitated experiences with opportunity for day-to-day practice) [Citation11,Citation12] intervention is provided.
Participation is an essential driving force of life-span development, providing opportunities to develop autonomy, belonging, and mastery [Citation13] – which in turn support ongoing participation. Achieving equitable participation requires action across the ecological levels including advocacy for rights; policy settings that drive participation focused service delivery; collaboration across service sectors; supports for family to reduce stress and build resources; and capacity building in young people within their preferred life situations.
Disclosure statement
No potential conflict of interest was reported by the author(s).
References
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- Anaby D, Khetani M, Piskur B, et al. Towards a paradigm shift in pediatric rehabilitation: accelerating the uptake of evidence on participation into routine clinical practice. Disabil Rehabil. 2021. DOI:https://doi.org/10.1080/09638288.2021.1903102.
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- 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.
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- Augustine L, Lygnegard F, Granlund M. Trajectories of participation, mental health, and mental health problems in adolescents with self-reported neurodevelopmental disorders. Disabil Rehabil. 2021. DOI:https://doi.org/10.1080/09638288.2021.1955304.
- 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.
- 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.
- 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.
- Arnell S, Jerlinder K, Geidne S, et al. Experiences of stakeholder collaboration when promoting participation in physical activity among adolescents with autism spectrum disorder. Disabil Rehabil. 2021. DOI:https://doi.org/10.1080/09638288.2021.1887944.
- 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.
- Bentzen M, Malmquist LK. 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.