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

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.

Clinical Trial Registration Number

Australian New Zealand Clinical Trials Registry – ACTRN12617000644369p

IMPLICATIONS FOR REHABILITATION

• Adapted cycling is a fun and engaging activity for young people with cerebral palsy.

• Environmental and personal factors should be carefully considered when prescribing adapted or FES cycling programs to this group.

• Engagement in adapted and FES-cycling programs can be facilitated by access to loan equipment, a goal-directed focus, and positive therapist–child relationship.

• Participation in adapted cycling is limited by access to adapted cycling equipment.

Keywords:

• Adapted bikes
• adapted cycling
• cerebral palsy
• functional electrical stimulation
• goal-directed training
• paediatrics

Acknowledgements

This study was completed as part of EA’s doctoral programme.

Ethics approval

Ethical clearance for this study was obtained from the relevant human research ethics committees (HREC/17/QRCH/88; SSA/17/QRCH/145; GU2018/037).

Statement of deidentification

Statements from participants have been deidentified and pseudonyms have been used throughout the manuscript to maintain anonymity.

Disclosure statement

An FES-bike used in the intervention study was provided on loan by Restorative Therapies (RT300-SL cycle, Restorative Therapies Inc., Baltimore). The company had absolutely no input into any part of the study, including the design, recruitment, implementation, data collection, analysis, or manuscript preparation. The study was conducted completely independent from Restorative Therapies.

Additional information

Funding

EA is supported by a Griffith University Higher Degree Research Scholarship. The funder played no role in the design, conduct or reporting of this study.