“It’s allowed us access to the outside world”: A Qualitative Study of Lifespan Supported Mobility Device Use in Cerebral Palsy

Abstract

Aim: The overarching aim of this research was to 1) Understand the mobility experiences, supported mobility device (SMD) use, and desired participation outcomes of people with cerebral palsy (CP) across the lifespan; and 2) Describe how perspectives of rehabilitation care and professional resources may influence mobility decision-making processes and outcomes. The aim of this study was to understand the lived experience of SMD provision and use with a focus group guide co-developed by stakeholders. Methods: Focus groups were conducted with 164 participants (people with CP, caregivers, and healthcare providers) across four US cities. Sessions were audio-recorded, transcribed, and analyzed using constant comparison. Results: Six themes emerged. Five presented across all stakeholder groups: 1) The System is Broken; 2) Equipment is Simultaneously Liberating and Restricting; 3) Adaptation Across the Lifespan; 4) Designed for Transport, not for Living; and 5) Sharing Our Stories and Sharing Resources. One theme was specific to healthcare provider groups: Caught in the Middle. Interpretation: This qualitative study underscores the simultaneous value and frustration associated with SMD, and the need to improve connections and resource networks within the CP community to improve SMD design and provision processes across device types and across the lifespan for people with CP.