Parents’ perceptions of power wheelchair prescription for children with a neuromuscular disorder: a scoping review

Abstract

Purpose: To conduct a scoping review of the published evidence on parents’ perceptions of power wheelchair prescription for children with a neuromuscular disorder and clinicians’ influence on timely wheelchair implementation.

Method: Nine electronic databases and reference lists of all retrieved full-text articles were searched up to March 2017. Eligibility criteria included (1) at least one child participant with a neuromuscular disorder, (2) power wheelchair as an intervention, and (3) qualitative, quantitative or mixed methods parent-reported outcomes related to power wheelchair equipment.

Results: None of the 67 eligible studies examined parental perceptions of wheelchair prescription as a primary aim, and only 10 studies included children with a neuromuscular disorder. Parents reported their own emotional responses including grief and loss, emphasis on their child’s walking and lack of accessibility as key barriers to power wheelchair prescription. Clinicians’ perspectives on walking and powered mobility influenced parental decision-making regarding power wheelchair use for their child.

Conclusion: Parents’ experiences of initial wheelchair prescription have not been explored in existing literature. Clinicians’ understanding of the benefits of power wheelchair equipment, particularly in the context of progression of neuromuscular disorders, is critical to facilitating timely wheelchair prescription with children. Condition-specific evidence is urgently needed to inform and support multidisciplinary management of children and their families.

Implications for Rehabilitation

• It is important that rehabilitation professionals recognize parental barriers to initial power wheelchair prescription, such as strong emotional responses, an emphasis on their child’s walking and lack of access.

• Clinicians’ perspectives on walking and powered mobility may influence parental decision-making regarding engagement in power wheelchair prescription and rehabilitation.

• It is critical that clinicians are aware of and actively educate families regarding the benefits of powered mobility to facilitate timely prescription and support physical and psychological adjustment.

Keywords:

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

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

Sarah-Grace Paguinto is the recipient of the Olivia Dahdah Research Scholarship. A/Professor Nadine Kasparian is the recipient of a Heart Foundation Future Leader Fellowship (101229). Dr Michelle Farrar received support from the Motor Neurone Diseases Research Institute of Australia Beryl Bayley MND Postdoctoral Fellowship.