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

References

• Birnkrant DJ, Bushby K, Bann CM, et al. Diagnosis and management of Duchenne muscular dystrophy, part 1: diagnosis, and neuromuscular, rehabilitation, endocrine, and gastrointestinal and nutritional management. Lancet Neurol. 2018;17(3):251–267.
   PubMed Web of Science ®Google Scholar
• Wang CH, Bonnemann CG, Rutkowski A, et al. Consensus statement on standard of care for congenital muscular dystrophies. J Child Neurol. 2010;25(12):1559–1581.
   PubMed Web of Science ®Google Scholar
• Wang CH, Dowling JJ, North K, et al. Consensus statement on standard of care for congenital myopathies. J Child Neurol. 2012;27(3):363–382.
   PubMed Web of Science ®Google Scholar
• Mercuri E, Finkel RS, Muntoni F, et al. Diagnosis and management of spinal muscular atrophy: part 1: recommendations for diagnosis, rehabilitation, orthopedic and nutritional care. Neuromuscul Disord. 2018;28(2):103–115.
   PubMed Web of Science ®Google Scholar
• Guerette P, Furumasu J, Tefft D. The positive effects of early powered mobility on children's psychosocial and play skills. Assistive Technol. 2013;25(1):39–48.
   PubMed Web of Science ®Google Scholar
• Jones MA, McEwen IR, Neas BR. Effects of power wheelchairs on the development and function of young children with severe motor impairments. Pediatr Phys Ther. 2012;24(2):131–140.
   PubMed Web of Science ®Google Scholar
• Dunaway S, Montes J, O'Hagen J, et al. Independent mobility after early introduction of a power wheelchair in spinal muscular atrophy. J Child Neurol. 2013;28(5):576–582.
   PubMed Web of Science ®Google Scholar
• Livingstone R, Field D. Systematic review of power mobility outcomes for infants, children and adolescents with mobility limitations. Clin Rehabil. 2014;28(10):954–964.
   PubMed Web of Science ®Google Scholar
• Butler C. Effects of powered mobility on self-initiated behaviors of very young children with locomotor disability. Dev Med Child Neurol. 1986;28(3):325–332.
   PubMed Web of Science ®Google Scholar
• Paguinto S-G, Kasparian N, Bray P, et al. Parents' perceptions of power wheelchair prescription for children with a neuromuscular disorder: a scoping review. Disabil Rehabil. 2019;41(23):2750–2757.
   PubMed Web of Science ®Google Scholar
• Paguinto SG, Kasparian NA, Bray P, et al. “It’s not just the wheelchair, it’s everything else”: Australian parents’ perspectives of wheelchair prescription for children with neuromuscular disorders. Disability and Rehabilitation. 2019;21:1–10.
   Google Scholar
• Guerette P, Tefft D, Furumasu J. Pediatric powered wheelchairs: Results of a national survey of providers. Assist Technol. 2005;17(2):144–158.
   PubMed Web of Science ®Google Scholar
• Kenyon LK, Jones M, Livingstone R, et al. Power mobility for children: a survey study of American and Canadian therapists' perspectives and practices. Dev Med Child Neurol. 2018;60(10):1018–1025.
   PubMed Web of Science ®Google Scholar
• Pituch E, Rushton PW, Ngo M, et al. Powerful or powerless? Children's, parents', and occupational therapists' perceptions of powered mobility. Phys Occup Ther Pediatr. 2018;11:1–16.
   Google Scholar
• Huhn K, Guarrera-Bowlby P, Deutsch JE. The clinical decision-making process of prescribing power mobility for a child with cerebral palsy. Pediatr Phys Ther. 2007;19(3):254–260.
   PubMedGoogle Scholar
• Livingstone R, Paleg G. Practice considerations for the introduction and use of power mobility for children. Dev Med Child Neurol. 2014;56(3):210–221.
   PubMed Web of Science ®Google Scholar
• Patton M. Qualitative evaluation and research method. 2nd ed. London: SAGE Publications; 1990.
   Google Scholar
• Miles MB, Huberman AM, Saldaña J. Qualitative data analysis. A methods sourcebook. 3rd ed. London: SAGE Publications Ltd; 2014.
   Google Scholar
• Bazeley P. Qualiative data analysis: practical strategies. London: SAGE; 2013.
   Google Scholar
• NVivo QSR International Pty Ltd. 2020. Available from: https://www.qsrinternational.com/nvivo-qualitative-data-analysis-software/home.
   Google Scholar
• Prochaska JO, Velicer WF. The transtheoretical model of health behavior change. Am J Health Promot. 1997;12(1):38–48.
   PubMed Web of Science ®Google Scholar
• Anderson YC, Dolan GMS, Wynter LE, et al. Caregiver's readiness for change as a predictor of outcome and attendance in an intervention programme for children and adolescents with obesity: a secondary data analysis. BMJ Open. 2019;9(3):e023195.
   PubMed Web of Science ®Google Scholar
• Rhee KE, De Lago CW, Arscott-Mills T, et al. Factors associated with parental readiness to make changes for overweight children. Pediatrics. 2005;116(1):e94.
   PubMed Web of Science ®Google Scholar
• Elwyn G, Laitner S, Coulter A, et al. Implementing shared decision making in the NHS. BMJ. 2010;341:c5146.
   PubMed Web of Science ®Google Scholar
• Elwyn G, Frosch D, Thomson R, et al. Shared decision making: a model for clinical practice. J Gen Intern Med. 2012;27(10):1361–1367.
   PubMed Web of Science ®Google Scholar
• Jackson C, Cheater FM, Reid I. A systematic review of decision support needs of parents making child health decisions. Health Expect. 2008;11(3):232–251.
   PubMed Web of Science ®Google Scholar
• Paganoni S, Nicholson K, Leigh F, et al. Developing multidisciplinary clinics for neuromuscular care and research. Muscle Nerve. 2017;56(5):848–858.
   PubMed Web of Science ®Google Scholar
• Joseph-Williams N, Lloyd A, Edwards A, et al. Implementing shared decision making in the NHS: lessons from the MAGIC programme. BMJ. 2017;357:j1744.
   PubMed Web of Science ®Google Scholar
• Samson A, Tomiak E, Dimillo J, et al. The lived experience of hope among parents of a child with Duchenne muscular dystrophy: perceiving the human being beyond the illness. Chronic Illn. 2009;5(2):103–114.
   PubMedGoogle Scholar
• Pinquart M. Depressive symptoms in parents of children with chronic health conditions: a meta-analysis. J Pediatr Psychol. 2019;44(2):139–149.
   PubMed Web of Science ®Google Scholar
• Glover S, Hendron J, Taylor B, et al. Understanding carer resilience in Duchenne muscular dystrophy: a systematic narrative review. Chronic Illn. 2020;16(2):87–103.
   PubMed Web of Science ®Google Scholar
• Qian Y, McGraw S, Henne J, et al. Understanding the experiences and needs of individuals with Spinal Muscular Atrophy and their parents: a qualitative study. BMC Neurol. 2015;15:217.
   PubMed Web of Science ®Google Scholar
• Farrar MA, Carey KA, Paguinto SG, et al. Financial, opportunity and psychosocial costs of spinal muscular atrophy: an exploratory qualitative analysis of Australian carer perspectives. BMJ Open. 2018;8(5):e020907.
   PubMed Web of Science ®Google Scholar
• Chambers GM, Settumba SN, Carey KA, et al. Prenusinersen economic and health-related quality of life burden of spinal muscular atrophy. Neurology. 2020;95(1):e1–e10.
   PubMed Web of Science ®Google Scholar
• Boyer F, Drame M, Morrone I, et al. Factors relating to carer burden for families of persons with muscular dystrophy. J Rehabil Med. 2006;38(5):309–315.
   PubMed Web of Science ®Google Scholar
• Farmer JE, Marien WE, Clark MJ, et al. Primary care supports for children with chronic health conditions: identifying and predicting unmet family needs. J Pediatr Psychol. 2004;29(5):355–367.
   PubMed Web of Science ®Google Scholar
• Birnkrant DJ, Bushby K, Bann CM, et al. Diagnosis and management of Duchenne muscular dystrophy, part 3: primary care, emergency management, psychosocial care, and transitions of care across the lifespan. Lancet Neurol. 2018;17(5):445–455.
   PubMed Web of Science ®Google Scholar
• Magliano L, Scutifero M, Patalano M, et al. Integrated care of muscular dystrophies in Italy. Part 2. Psychological treatments, social and welfare support, and financial costs. Acta Myologica: Myopathies and Cardiomyopathies. 2017;36(2):41–45.
   PubMedGoogle Scholar
• McMenamy J, Perrin EC. Integrating psychology into pediatrics: the past, the present, and the potential. Families, Systems, & Health. 2002;20(2):153–160.
   Google Scholar
• Castro R, Senecat J, de Chalendar M, et al. Bridging the gap between health and social care for rare diseases: key issues and innovative solutions. Adv Exp Med Biol. 2017;1031:605–627.
   PubMed Web of Science ®Google Scholar
• Alsharaydeh EA, Alqudah M, Lee RLT, et al. Challenges, coping, and resilience among immigrant parents caring for a child with a disability: an integrative review. J Nurs Scholarsh. 2019;51(6):670–679.
   PubMed Web of Science ®Google Scholar
• Griner D, Smith TB. Culturally adapted mental health intervention: a meta-analytic review. Spec Iss Cult Race Ethnicity Psychother. 2006;43(4):531–548.
   Google Scholar
• Majumdar B, Browne G, Roberts J, et al. Effects of cultural sensitivity training on health care provider attitudes and patient outcomes. J Nurs Scholarsh. 2004;36(2):161–166.
   PubMed Web of Science ®Google Scholar
• Wheelchair provision for children and adults with neuromuscular conditions in British Columbia: University of British Columbia; 2014. [cited 2018 Aug 15]. Available from: https://med-fom-clone-pt.sites.olt.ubc.ca/files/2012/05/Wheelchair-Provision-for-Children-and-Adults-with-Neuromuscular-Conditions-in-British-Columbia-v1-April-2014.pdf.
   Google Scholar
• Wheelchair provision for children and adults with muscular dystrophy and other neuromuscular conditions: Best practice guidelines: Muscular Dystrophy UK; 2011. [cited 2018 Aug 15]. Available from: http://www.musculardystrophyuk.org/wp-content/uploads/2015/02/wheelchair-guidelines.pdf.
   Google Scholar