Getting Wheels: development and evaluation of a psychoeducational resource for parents of children with a neuromuscular condition following recommendation of wheelchair equipment

Sarah-Grace Paguinto; Nadine A Kasparian; Kate Carroll; Nicole Thomas; Paula Bray; Michelle A Farrar

doi:10.1080/17483107.2024.2310282

Getting Wheels: development and evaluation of a psychoeducational resource for parents of children with a neuromuscular condition following recommendation of wheelchair equipment

Disabil Rehabil Assist Technol. 2024 Feb 3:1-11. doi: 10.1080/17483107.2024.2310282. Online ahead of print.

Authors

Sarah-Grace Paguinto^{1

2}, Nadine A Kasparian^{3

4}, Kate Carroll⁵, Nicole Thomas⁶, Paula Bray⁷, Michelle A Farrar²

Affiliations

¹ Occupational Therapy Department, Sydney Children's Hospital, Randwick, Australia.
² Discipline of Paediatrics and Children's Health, School of Clinical Medicine, UNSW Medicine and Health, UNSW Sydney, Sydney, Australia.
³ Heart and Mind Wellbeing Center, Heart Institute and the Division of Behavioral Medicine and Clinical Psychology, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA.
⁴ Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, OH, USA.
⁵ Department of Neurology, The Royal Children's Hospital, Parkville, Australia.
⁶ Physiotherapy Department, Queensland Children's Hospital, Brisbane, Australia.
⁷ Faculty of Health Sciences, The University of Sydney, Sydney, Australia.

PMID: 38308497
DOI: 10.1080/17483107.2024.2310282

Abstract

Purpose: Access to credible information can facilitate parental engagement in wheelchair prescription for their child with a neuromuscular condition (NMC). In this study, we developed and evaluated acceptability, perceived usefulness and emotional responses to a psychoeducational booklet for parents of children with a NMC.

Methods: Australian parents of children who had been recommended a wheelchair and clinicians caring for children with NMCs were invited to evaluate the booklet, Getting Wheels. The booklet included 11 chapters, each covering distinct aspects of wheelchair prescription and supportive care. Participants completed one online survey including validated and study-specific measures.

Results: Twenty-seven parents (71% response rate, 78% mothers) and nine clinicians (90% response rate, 89% women) participated. All parents endorsed the booklet as addressing their information and support needs, and 93% agreed it would help parents engage in the wheelchair prescription process. All clinicians endorsed the booklet as addressing parents' information and support needs and agreed they could use the booklet in clinical practice.

Conclusions: Parents and clinicians rate Getting Wheels as acceptable for use in the context of wheelchair recommendation for children with a neuromuscular condition. Next steps include prospective examination of booklet use in clinical practice and adaptation to culturally and linguistically diverse populations.Implications for rehabilitationThe co-designed "Getting Wheels" booklet provides tailored information for use in the context of wheelchair recommendation for children with a neuromuscular condition.The emotions elicited throughout wheelchair prescription endorse the need for integrated psychosocial multidisciplinary care to improve access and support the ongoing emotional needs of this population.Parents of children who receive wheelchair recommendation between zero and two years require greater support from clinicians regarding their thoughts and feelings about wheelchair prescription.Parents of children with a neuromuscular condition and treating clinicians support provision of a tailored psychoeducational resource when a child is recommended a wheelchair.

Keywords: Decision-making; emotions; equipment; family-centred; mobility; transition.