A qualitative analysis of the experiences of children with cerebral palsy and their caregivers in a goal-directed cycling programme

Ellen L Armstrong, Roslyn N Boyd, Christopher P Carty, Megan J Kentish, Benjamin I Goodlich, Sean A Horan

Abstract

Purpose: This qualitative thematic analysis aimed to capture the experiences of children with cerebral palsy (CP) and caregivers who completed an 8-week goal-directed cycling programme, to provide insights on engagement and programme feasibility.

Methods: Children with CP (6-18 years, Gross Motor Function Classification Scale (GMFCS) levels II-IV) and caregivers completed semi-structured interviews at the end of the training programme. Interview transcripts were coded by two investigators and systematically organised into themes. A third investigator reviewed the final thematic map.

Results: 17 interviews were conducted with 29 participants (11 children: 7-14 years). Four themes emerged: facilitators and challenges to programme engagement; perceived outcomes; the functional-electrical stimulation (FES) cycling experience; and previous cycling participation. Engagement was facilitated by the "therapist's connection," "cycling is fun" and "participant driven goal setting," while "getting there" and "time off school" were identified as challenges. Participants positively linked improved physical function to greater independence. The FES-experience was "fun and challenging," and participants had mixed feelings about electrode "stickiness." Previous cycling participation was limited by access to adapted bikes.

Conclusions: Children with CP enjoy riding bikes. Facilitators and challenges to engagement were identified that hold practical relevance for clinicians. Environmental and personal factors should be carefully considered when developing future programs, to maximise opportunities for success.

Keywords: Adapted bikes; adapted cycling; cerebral palsy; functional electrical stimulation; goal-directed training; paediatrics.