Wheelchair skills education and training for children with spina bifida and/or hydrocephalus and their parents: a pilot study

Background: Many children with spina bifida and/or hydrocephalus use manual wheelchairs. However, training to ensure appropriate wheelchair use is limited and informal, and this negatively impacts daily activity and participation. Evidence suggests formal training can increase children’s confidence and independence, with early intervention being critical for healthy development. In Ireland, like in many other regions internationally, such interventions are not readily available to families. Aim and objectives: The overall aim of the study was to pilot wheelchair skills training for children aged 3–8 years with spina bifida and/or hydrocephalus and their parents, to develop a sustainable program. The objectives were: (1) to develop and evaluate a wheelchair skills information pack; (2) to investigate the impact of training on children’s performance of wheelchair skills; (3) to explore parents’ perspectives on how training influenced their children’s daily participa tion; (4) to identify beneficial aspects of program delivery for children and parents. Methods: We applied a mixed-methods study design that included three stages: (1) evaluation of the use of a be spoke wheelchair skills information pack; (2) within-subject pre-post analysis of the wheelchair skills test (WST) and individual training goals; (3) qualitative thematic analysis of Photovoice documentary narratives from focus groups with parents. Results: Four children and their parents participated in the study. Parents reported the wheelchair skills information pack to be useful, recommending more child-friendly images, and the provision of the pack when children first receive their wheelchairs. Analysis of the pre/post-WST showed an increase in the performance of skills. Parents’ perspec tives and experiences are captured in two Photovoice themes: (1) children developing their skills, (2) supporting parents to support their children. Conclusion: The pilot program was a success for these families, highlighting potential gaps in Irish wheelchair provision services and the need for wheelchair skills education and training to support parents and children.