Multidisciplinary perspectives and practices of wheelchair prescription for children with neuromuscular conditions

Abstract

Purpose

Clinical practice guidelines for paediatric neuromuscular disorders (NMDs) recommend timely provision of wheelchair equipment. The aim of this qualitative study was to understand healthcare professionals’ clinical perspectives and practices when recommending wheelchair equipment for the first time, as well as perceived barriers and enablers to timely wheelchair provision.

Methods

Twenty-one healthcare professionals (HCPs) from Australia and the United States participated in an interview (response rate: 88%, 16/21 women). Participants were from diverse disciplines, based in hospital or community health settings, and had at least one year of experience working in paediatric neuromuscular care.

Results

Child fatigue, falls and engagement in age-appropriate activity were common reasons for HCP’s wheelchair recommendation. HCPs were acutely aware of parents’ experiences of grief and loss throughout the wheelchair prescription process, and over half acknowledged the lack of psychological care available to families affected by NMDs. Multi-disciplinary collaboration, psychologically-informed care, and shared decision-making with stakeholders were perceived enablers of wheelchair transition. Barriers included limited access to equipment, lengthy funding processes and lack of funding for home and vehicle modifications.

Conclusions

Integrated psychosocial care is needed to support families throughout their child’s disease progression, including wheelchair transition. Implementation of readiness for change tools, and development of tailored informational resources is recommended. Improved access to equipment options and trials, and more efficient funding processes are highly likely to improve parental engagement throughout the wheelchair prescription process.

Implications for rehabilitation

• Healthcare professionals express a strong demand for integrated psychosocial care within paediatric neuromuscular clinics to support families throughout transitions, including wheelchair introduction.

• Identifying parents’ readiness for change can inform their information and support needs, strengthen their decision-making capacity and facilitate timely wheelchair introduction.

• Stronger collaboration between hospital- and community-based health professionals working in paediatric neuromuscular care is recommended to facilitate knowledge exchange and support families’ transition to wheelchair use.

• Access to equipment options for extended loan or trial in the community can support timely wheelchair introduction.

Keywords:

• Wheelchair
• neuromuscular
• psychological stress
• grief
• decision-making
• prescription
• readiness for change

Disclosure statement

No potential conflict of interest was reported by the author(s).

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 National Heart Foundation of Australia Future Leader Fellowship [101229], and a 2018–2019 Harkness Fellowship in Health Care Policy and Practice from the Commonwealth Fund in New York.