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

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).

"The Whole Game is Changing and You've Got Hope": Australian Perspectives on Treatment Decision Making in Spinal Muscular Atrophy.

Introduction: The natural history and treatment of spinal muscular atrophy (SMA) is currently being transformed by the development and availability of novel therapies, with significant related changes in practice. This not only has important implications for the health and wellbeing of patients with SMA and their families, as well as improves the quality of care.

Objective: The present study aimed to investigate the processes and factors that influence treatment and healthcare decisions for children and adults with SMA and their families and healthcare providers.

"It's not just the wheelchair, it's everything else": Australian parents' perspectives of wheelchair prescription for children with neuromuscular disorders.

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.

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

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. 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.

Financial, opportunity and psychosocial costs of spinal muscular atrophy: an exploratory qualitative analysis of Australian carer perspectives.

Objectives: Spinal muscular atrophy (SMA) has profound implications for patients and families. The aim of the present study was to gain insights into the effects caring for a child with SMA has on the costs incurred by families caring for a child with SMA from carer perspectives to identify gaps in provision of care, inform public policy and cost-effectiveness analyses.

Design: Interpretive phenomenological analysis guided the delivery and analysis of semi-structured interviews undertaken to explore the financial, opportunity and psychosocial costs associated with caring for children with SMA.