https://orcid.org/0000-0002-3012-2119
Twenty years after the World Health Organization adoption of the International Classification of Function, Disability, and Health, there has been significant progress in our understanding of participation of youth with disabilities. These five papers further contribute to this body of literature, and our understanding of participation patterns and predictors. We commend the authors for providing us with their insightful implications for rehabilitation. It seems that the time is ripe for change in rehabilitation practice. The question is how service providers should change their professional behaviour and what to focus on. The following three main ideas emerging across these papers may serve as a starting point.
First, modifiable factors, not just the health condition itself, influence participation
Studies in this special issue reveal family ecology, parent stress and empowerment, well-being, and mental health are associated with participation [Citation1–5]. Yet, the majority of rehabilitation practice continues to be focused on modifying (or ‘fixing’) the health condition and its associated impairments (that is, modifying body functions and structures). It is time for practitioners to shift their practice in response to this growing body of evidence and focus intervention on both disability and modifiable factors associated with participation. This includes working with families, communities, to address their influences on participation. We also would argue that there is a role for healthcare providers to advocate within systems (health, education, and social systems) for policies that support participation and full inclusion [Citation6].
Second, participation is both an outcome and a mechanism by which youth develop skills, well being, and relationships
Theory and evidence suggest that immediate positive participation experiences lead to improved long term participation outcomes [Citation7]. Therefore, there must be a focus on both the immediate and long term participation of children and youth as they grow. Kalleson et al. [Citation3] and Milicevic et al. (in press) remind us that from a young age, children and their families need supports, resources and strategies to optimize participation both in the family and in the community context. Schwartz et al. [Citation5] and Augustine et al. [Citation1] contribute to our understanding of the dynamic influence between mental health, mental well-being, and participation in adolescence through early adulthood. Rehabilitation professionals can help youth and their families broaden their expectations for what is possible for full participation, beyond just being present, to meaningful engagement in enjoyable, fun, and valued activities with family and friends [Citation8].
Third, we have the evidence-based tools to make participation-focused rehabilitation a reality, right now
As illustrated by the studies in this special issue, the field has multiple assessments of participation, used in multiple countries and multiple populations. Other research demonstrates the promise of participation- focused interventions, such as PREP [Citation9], Project TEAM [Citation10], and FitSkills [Citation11]. These tools enable practitioners to meet the participation goals of youth and their families. Our field also has the opportunity to expand the evidence for these tools across cultures, languages, and sociopolitical contexts.
The key messages of the five papers resonate with the shift toward adoption of an approach to lifecourse health development for children and young people with special healthcare needs (including physical, mental or developmental conditions) that emphasizes physical, mental, and emotional wellbeing and goals for desired and meaningful participation over the life course.
Disclosure statement
No potential conflict of interest was reported by the author(s).
References
- Augustine L, Lygnegård F, Granlund M. Trajectories of self-rated 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.
- van der Kemp J, Ketelaar M, Gorter JW.Environmental factors associated with participation and its related concepts among children and youth with cerebral palsy: a rapid review. Disabil Rehabil. 2021. DOI:https://doi.org/10.1080/09638288.2021.1923839.
- Kalleson R, Jahnsen R, Østensjø S. Exploring participation in family and recreational activities among children with cerebral palsy during early childhood: how does it relate to motor function and parental empowerment. Disabil Rehabil. 2021. DOI: https://doi.org/10.1080/09638288.2021.1894608.
- Milicevic M. Exploring participation in family activities among children with cerebral palsy and children with typical development: diversity, frequency, children’s presence and engagement. Disabil Rehabil. 2021. DOI:https://doi.org/10.1080/09638288.2021.1958931.
- Schwartz AE, Sally Rogers E, Russinova Z. Predictors of community-based employment for young adults with intellectual disability and co-occurring mental health conditions. Disabil Rehabil. 2021. DOI:https://doi.org/10.1080/09638288.2021.1907457.
- Gorter JW, Stewart D, Woodbury-Smith M. Youth in transition: care, health and development. Child Care Health Dev. 2011;37(6):757–763.
- Gorter JW, Stewart D, Smith MW, et al. Pathways toward positive psychosocial outcomes and mental health for youth with disabilities: a knowledge synthesis of developmental trajectories. Can J Comm Ment Health. 2014;33(1):45–61.
- Rosenbaum P, Gorter JW. The 'F-words' in childhood disability: I swear this is how we should think! Child Care Health Dev. 2012;38(4):457–463.
- Anaby DR, Law M, Feldman D, et al. The effectiveness of the pathways and resources for engagement and participation (PREP) intervention: improving participation of adolescents with physical disabilities. Dev Med Child Neurol. 2018;60(5):513–519.
- Kramer JM, Helfrich C, Levin M, et al. Initial evaluation of the effects of an environmental‐focused problem‐solving intervention for transition‐age young people with developmental disabilities: Project TEAM. Dev Med Child Neurol. 2018;60(8):801–809.
- Shields N, van den Bos R, Buhlert-Smith K, et al. A community-based exercise program to increase participation in physical activities among youth with disability: a feasibility study. Disabil Rehabil. 2019;41(10):1152–1159.