“It’s not just the wheelchair, it’s everything else”: Australian parents’ perspectives of wheelchair prescription for children with neuromuscular disorders

Abstract

Purpose: Standards of care for neuromuscular disorders recommend timely provision of wheelchair equipment to support independent and spontaneous movement, age-appropriate participation, and psychological, social, cognitive and communication skills. Parental engagement is crucial to initiating wheelchair prescription. No studies have investigated parents’ perceptions of this process or their experiences of their child’s transition to wheelchair equipment.

Methods: Seventeen families of children with a neuromuscular disorder who were recommended wheelchair equipment participated in an interview (response rate: 53%). Diagnoses included muscular dystrophies, spinal muscular atrophy, and congenital myopathy.

Results: Findings showed that wheelchair prescription represented a milestone for parents in their child’s disease progression. Parents described experiencing strong emotional responses, with the potential to eclipse pragmatic factors. Perceiving wheelchair equipment as an adjunct to their child’s functioning and participation positively influenced parents’ receptivity to wheelchair recommendation. Parents’ receptivity to wheelchair recommendation was also influenced by their emotional experience, their child’s weight-bearing ability and participation in age appropriate activities.

Conclusions: Enablers to parental engagement in the wheelchair prescription process included timely psychological care and social support, a child- and family-centered approach to care, and ease of access to credible information. This study shows wheelchair prescription is a complex and multi-faceted process that represents more than just a piece of equipment to parents.

Implications for rehabilitation

• Parents experience a range of emotions and challenges as their child’s neuromuscular condition progresses, including the introduction of a wheelchair.

• Anticipatory care and education from health professionals is required to support families’ transition to wheelchair equipment.

• Facilitators to parents’ engagement in wheelchair prescription include a family-centered approach, collaborative decision-making between families and health professionals, and access to information and psychosocial support.

Keywords:

• Neuromuscular disorder
• wheelchair
• prescription
• parent
• perception
• children

Disclosure statement

The authors report no conflicts of interest.

Additional information

Funding

Sarah-Grace Paguinto is the recipient of a Sydney Children’s Hospital Foundation Postgraduate Research Scholarship. Nadine Kasparian is the recipient of a 2018-2019 Harkness Fellowship in Health Care Policy and Practice from the Commonwealth Fund and a National Heart Foundation of Australia Future Leader Fellowship [101229]. Dr Farrar received grant support from the Motor Neurone Diseases Research Institute of Australia Beryl Bayley MND Postdoctoral Fellowship [152324].