Building a Child- and Family-Centered Research Partnership to Promote Physical Activity Participation for Children With Disabilities

PURPOSE: All children benefit from health-promoting physical activity (PA), including those with disabilities. PA is especially important for children because achieving an active lifestyle early improves their prospects for an active lifestyle during adulthood. Children with disabilities are more restricted in their PA opportunities, more sedentary, and have lower levels of health-related fitness than children without disabilities (Rimmer & Rowland, 2008), resulting in a significant function and health disparity. Supporting health outcomes and the participation of children with disabilities in their communities is a national priority and an objective of Healthy People 2020 (Office of Disease Prevention and Health Promotion, 2016).

A complex web of child, family, and environment factors serve as PA facilitators and barriers (Bloemen et al., 2015; Jirikowic & Kerfeld, 2016). Children with disabilities may be less likely to participate in PA because of environmental barriers (e.g., inaccessible facilities, lack of trained staff). Alternatively, PA facilitators exist. For example, children are likely to be physically active when their parents are active and encourage them to be active or when children have access to adaptive equipment. Occupational therapists play a vital role in examining person, environment, and occupation factors that can help establish and promote habits and routines including engagement in health-promoting PA (Jirikowic & Kerfeld, 2016).

METHOD: The Keep on Movin’ partnership, consisting of patient/caregivers (children with disabilities and their parents), community stakeholders (health care professionals; community health, school, and social service providers; community organizations; industry and government representatives), and researchers, was established to promote the health of children with disabilities by improving their participation in PA throughout their daily life. Our partnership team is working toward a comparative effectiveness research question that focuses on promoting PA participation and healthy lifestyles for children with disabilities with support from the Patient-Centered Outcomes Research Institute. We will describe research capacity–building activities that were conducted to recruit, engage, and establish governance among a research partnership team dedicated to developing stakeholder-driven and -informed research.

A total of 34 patient/caregivers and community stakeholders were successfully recruited and participated in three research capacity–building community meetings across rural, urban, and suburban geographic areas of Washington State. Information gathered from all participants validated the critical need for research to understand what approaches or program features support access to and participation in health-promoting PA for children with disabilities not only as children, but also throughout the lifespan. This stakeholder-driven information has laid vital groundwork to identify and compare interventions or program features that may improve health-promoting PA participation among children with disabilities.

IMPACT STATEMENT: Occupational therapy practitioners value child- and family-centered care and interventions that promote health and well-being. Outcomes and lessons learned from these research capacity–building activities provide a basis for engaging children, families, and community members in the identification of meaningful and client-driven research questions and outcomes around the topic of health-promoting PA.

References

Bloemen, M. A. T., Backx, F. J. G., Takken, T., Wittink, H., Benner, J., Mollema, J., & de Groot, J. F. (2015). Factors associated with physical activity in children and adolescents with a physical disability: A systematic review. Developmental Medicine and Child Neurology, 57, 137–148. https://doi.org/10.1111/dmcn.12624

Jirikowic, T. L., & Kerfeld, C. I. (2016). Health-promoting physical activity of children who use assistive mobility devices: A scoping review. American Journal of Occupational Therapy, 70, 7005180050. https://doi.org/10.5014/ajot.2016.021543

Office of Disease Prevention and Health Promotion. (2016). Disability and health. In Healthy People 2020. Retrieved from https://www.healthypeople.gov/2020/topics-objectives/topic/disability-and-health

Rimmer, J. H., & Rowland, J. L. (2008). Physical activity for youth with disabilities: A critical need in an underserved population. Developmental Neurorehabilitation, 11, 141–148. https://doi.org/10.1080/17518420701688649