Participation‐based intervention in childhood disability: a family‐centred approach

The systematic review by Arakelyan et al. highlights the importance of two key elements of pediatric rehabilitation: (1) participation in life activities and experiences; and (2) a family-centred approach. The authors identify the various family factors that affect participation of disabled children, particularly in after-school recreation activities. They divide these into non-modifiable ‘status’ factors (e.g. parental education, ethnicity, or family composition) and modifiable ‘process’ factors (e.g. parental stress, lower maternal sense of efficacy, or financial constraints), the latter of which they argue should constitute the target of pediatric rehabilitation interventions. The findings dovetail with other frameworks and interventions currently undertaken in pediatric rehabilitation. For example, the ‘F-words’ approach, built upon the International Classification of Functioning, Disability and Health (ICF) framework, identifies six domains of life that shape a person’s health and development: Function, Family, Fitness, Fun, Friends, and Future. Applying this framework to any person’s life situation highlights the myriad ways in which participation can happen in different areas of life. Notably, one of the six F-words is Family, an acknowledgement of the fact that the family constitutes every person’s core environment; thus, family well-being must be a primary goal of all services and programs. Since participation is a complex phenomenon that is influence by a multitude of factors, focusing on the child’s wider environment for enhancing participation is therefore equally important. Designing interventions that target the family, as recommended by Arakelyan et al., raises important implications for clinical practice. The authors suggest activities such as educating caregivers about the importance of participation, providing information on financial relief, or referring them to support services or counselling. While these are important first steps, a truly family-centered approach needs to pay attention to the structural factors that shape the possibilities of choices of families and expand the role of service providers beyond the mere provision of information. After all, information (in itself) does not equal help. Therapists can take on a more active role in helping families arrange the logistics of their desired activities; for example, they could work with activity providers to arrange the necessary accommodation so that a child can participate in their chosen activity. Healthcare practitioners need to become advocates and educate not only parents, but also other stakeholders including policy makers, about the importance of accessible low-cost recreational opportunities that accommodate all children’s needs. Existing intervention approaches such as Occupational Performance Coaching and Pathways and Resources for Engagement and Participation have demonstrated the effectiveness of such strategies not only in improving children’s participation but also in acknowledging parental needs. Emerging parentresearcher initiatives such as the currently ongoing Envisage study involves workshops for supporting parents targeting both parents and service providers. Clearly, a family-centered approach must be incorporated in our pediatrics interventions. Further research is needed to reveal the strategies parents use to improve their child’s participation and examine how tailored parent-engaging therapies that involve a strong therapist-parent collaboration can build on and expand these strategies to support participation and inclusion. Expanding the capacity of families and enhancing their own ability to solve problems around participation can potentially minimize parental stress and build a sense of self-efficacy – factors that were found in this review to impact children’s participation. After all, the goal of pediatric rehabilitation is children’s well-being and that can only come about when families truly have the power to shape their circumstances.