Getting wheels – Development and pilot evaluation of a booklet for families when introducing a wheelchair to children with a neuromuscular condition

When walking is difficult to attain or maintain, the ability to mobilise independently with the use of wheelchair equipment is often a positive and joyful experience for families of children who have a paediatric neuromuscular condition. Despite its benefits and often inevitable need, parents of children with a neuromuscular condition commonly respond to wheelchair recommendation with hesitance, and the emotional impact can be immense yet often hidden and unsupported. Wheelchair provision may be delayed, posing risks to the child’s safety, function, and development. This thesis aims to understand parents’ perceptions of wheelchair recommendation, address their unmet information and support needs, and respond to these needs through user-informed development and evaluation of a tailored psycho-educational resource. A scoping review of qualitative and quantitative studies was systematically synthesised and critically appraised existing evidence, identified research gaps, and informed thesis design. The review of 10 studies identified themes such as the value parents place on walking, the grief and gradual adjustment that occurs when a wheelchair is recommended, and the need for tailored supports. It also confirmed that parents’ perceptions of wheelchair recommendation have not yet been explored for paediatric neuromuscular conditions. My first original qualitative study assessed the views and experiences of parents whose child had a confirmed diagnosis of a neuromuscular condition and been recommended a manual or power wheelchair. Interviews were conducted with 21 parents (13 mothers, 8 fathers) and a phenomenological approach was used to analyse the data. Common emotional responses included grief, loss and denial, which affected acceptance of wheelchair recommendation. Challenges navigating the unfamiliar, complex and multifaceted process of wheelchair prescription were also highlighted as a barrier to wheelchair engagement. Facilitators included integration of psychosocial care into multidisciplinary clinical ...