Current Mobility and Balance Rehabilitation Practices for Young Adults with Cerebral Palsy in Canada: Perspectives from People with Lived Experience

Research Objectives: To describe the experiences of current practices for the rehabilitation of mobility and balance in Canada for young adults with cerebral palsy (ACP) and to identify service gaps in these practices.

Design: Qualitative exploratory design.

Setting: Virtual research environment.

Participants: Three young adults (aged 18-39 years old) with a diagnosis of spastic cerebral palsy (CP) who walk on a daily basis, with or without physical assistance, and four licensed physical therapists (PTs) who worked with adolescents (aged 13-17 years) or young ACP in Canadian rehabilitation hospitals or private clinics.

Interventions: Not applicable.

Main Outcome Measures: Semi-structured interviews were conducted using separate guides tailored to each participant group, developed based on the Community Based Rehabilitation Matrix and research study objectives. Preliminary themes were identified through an inductive thematic analysis of interview transcripts.

Results: Four preliminary themes were identified: (1) Physical effects of aging with CP limit mobility and balance: Pain, fatigue and spasticity increase during adulthood and limit walking endurance and balance control. (2) Independent walking without gait aids is not a goal for ACP: ACP prefer to work on areas of functional strengthening, strategies for community participation (including gait aid prescription), and obstacle navigation. (3) Limited services exist to support ACP: Participants described minimal access to assistive equipment and devices, and publicly available rehabilitative services. (4) Role of private physical therapy (PT) systems in the paediatric to adult transition: Private services provided continuity of care during transition from paediatric to adult care; however, access is limited by socioeconomic factors and the availability of an adult practitioner who has CP experience.

Conclusions: Participants emphasized viewing CP as a disability across the lifespan and not just a childhood disability. PT care must be personalized and goal oriented, shifted away from a focus on independent ambulation. Additionally, there are insufficient public healthcare resources for aging CP individuals in Canada.

Author(s) Disclosures: Funded by the Coriat Family Research Fund.