Fuzzy, funny and fun! A thematic analysis of the experiences of children with cerebral palsy and their families in a goal-directed cycling program, 'Let's Ride a Bike'

Abstract

Background and Objective(s) The 'Let's Ride a Bike' randomized controlled trial (RCT) for children with CP reported clinically meaningful and significant improvements in gross motor function following 8 weeks of adapted-cycling, functional-electrical stimulation (FES) cycling and goal-directed training. This qualitative study aimed to capture of the experiences of the trial participants to provide insights on program feasibility, engagement, perceived barriers and facilitators to participation. Study Design Qualitative study using an inductive thematic analysis. Study Participants & Setting Participants included children with CP aged 6 to 18 years, Gross Motor Function Classification System (GMFCS) levels II to IV, and their caregivers who participated in the 'Let's Ride a Bike' RCT at a tertiary children's hospital in Australia. Materials/Methods Children and families voluntarily participated in semi-structured interviews at the end of the RCT. Interview questions were directed at children, and/or parent proxies. The thematic analysis followed six recursive steps, embedding trustworthiness criteria to instill confidence in the analysis. Interviews were recorded and transcribed after data collection was complete and coded independently by two investigators using NVivo 12. Codes were systematically analyzed and organized into themes by two investigators using mind maps. Data-excerpts were checked to ensure they formed coherent patterns and a third investigator reviewed the final themes in detail. Results 17 interviews were conducted with 29 participants (11 children: 3 male; 7-14 years, GMFCS II=6, III=4, IV=7; 18 primary caregivers). Four major themes emerged: facilitators and challenges to program engagement; perceived outcomes; the FES-cycling experience; and previous participation in cycling. 'Therapist's connection with participants', 'cycling is fun' and 'participant driven goal setting' were major facilitators to engagement, while 'getting there' and 'taking time off school' were challenges. Participants positively linked improved physical function to greater independence and participation in life activities. Participants were very positive about cycling outdoors. The FES-experience was 'fun and challenging', and participants had mixed feelings about electrode 'stickiness' and the FES sensation. Previous cycling participation was limited by access to appropriate bikes. Conclusions/Significance This study identified facilitators and challenges to participant engagement that hold practical relevance for researchers and clinicians. Parents were willing to overcome challenges of 'getting there' and 'busy life schedules' if they were motivated for their child to achieve functional outcomes and saw value in the program for their children. Consideration should be given to program location, appointment timing and accessibility to ensure program convenience. When prescribing adapted bikes and FES-cycling programs, environmental and personal factors must be considered.L6338699102021-01-13 <br />