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

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.

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). 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 rehabilitationHealthcare 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.

"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. METHODS: Four focus groups comprising adults, or parents of children and adolescents, with SMA and an expert panel of healthcare providers (N = 25) explored experiences of SMA, its treatment and related decision making and expectations for future care. Group discussions were recorded and transcribed verbatim for thematic analysis using NVivo12.0. RESULTS: People with SMA, their families and healthcare providers described confronting complex healthcare decisions in the context of a rapidly changing SMA treatment environment. Across all groups, five key themes were identified: hope, yearning and searching, patient-centred care and support, community and a sense of connectedness and weighing up potential treatment benefits and costs. Essential to these themes was the notion of what it means to live with SMA and complexities relating to 'quality of life'. CONCLUSION: Identifying and more deeply understanding the factors that influence patient, family and healthcare providers' decision making regarding SMA treatment is an important first step in improving the quality of patient- and family-centred care and in informing clinical practice and future health policy incorporating personalized medicine and optimal supportive and mental health care.

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

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 rehabilitationParents 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.

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

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 RehabilitationIt 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.

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. PARTICIPANTS AND SETTING: Parents of children with SMA types II and III from a single Australian paediatric neuromuscular clinic participated in this study. RESULTS: A range of experiences were reported and information saturation (n=7) was reached endorsing themes, including: significant financial and caregiving burdens, adjusted career choices and limitations on career progression and a complex landscape of access to funding, equipment, support and resources. Opportunity costs of foregone employment, purchases and leisure activities were substantial, as were emotional and social impacts. Participants voiced determination and resilience, and called for continued efforts to improve supportive care services and resources. CONCLUSIONS: The range and nature of costs met by families caring for a child with SMA were found to be expansive and not typically recognised. These include high direct costs associated with goods and services, indirect costs associated with voluntary care, substantial and long-term opportunities foregone in paid employment and career progression and unmeasured or hidden costs associated with mental health burden.