1,159
Views
7
CrossRef citations to date
0
Altmetric
Research Papers

“It’s not just the wheelchair, it’s everything else”: Australian parents’ perspectives of wheelchair prescription for children with neuromuscular disorders

, , &
Pages 3457-3466 | Received 01 Oct 2018, Accepted 12 Mar 2019, Published online: 21 Apr 2019

References

  • 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. 2018. DOI:10.1080/09638288.2018.1474496.
  • Wiart L, Darrah J, Hollis V, et al. Mothers' perceptions of their children's use of powered mobility. Phys Occup Ther Pediatr. 2004;24:3–21.
  • Guerette P, Tefft D, Furumasu J. Pediatric powered wheelchairs: results of a national survey of providers. Assist Technol. 2005;17:144–158.
  • Tefft D, Guerette P, Furumasu J. The impact of early powered mobility on parental stress, negative emotions, and family social interactions. Phys Occup Ther Pediatr. 2011;31:4–15.
  • Wiart L, Darrah J. Changing philosophical perspectives on the management of children with physical disabilities–their effect on the use of powered mobility. Disabil Rehabil. 2002;24:492–498.
  • Bray P, Bundy AC, Ryan MM, et al. Health status of boys with Duchenne muscular dystrophy: a parent's perspective. J Paediatr Child Health. 2011;47:557–562.
  • Gravelle AM. Caring for a child with a progressive illness during the complex chronic phase: parents' experience of facing adversity. J Adv Nurs. 1997;25:738–745.
  • 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.
  • Wang CH, Bonnemann CG, Rutkowski A, et al. Consensus statement on standard of care for congenital muscular dystrophies. J Child Neurol. 2010;25:1559–1581.
  • Wang CH, Dowling JJ, North K, et al. Consensus statement on standard of care for congenital myopathies. J Child Neurol. 2012;27:363–382.
  • 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;28:103–115.
  • Bottos M, Bolcati C, Sciuto L, et al. Powered wheelchairs and independence in young children with tetraplegia. Dev Med Child Neurol. 2001;43:769–777.
  • Guerette P, Furumasu J, Tefft D. The positive effects of early powered mobility on children's psychosocial and play skills. Assist Technol. 2013;25:39–48.
  • 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;24:131–140.
  • 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;28:576–582.
  • Jones MA, McEwen IR, Hansen L. Use of power mobility for a young child with spinal muscular atrophy. Phys Ther. 2003;83:253–262.
  • Sonday A, Gretschel P. Empowered to play: a case study describing the impact of powered mobility on the exploratory play of disabled children. Occup Ther Int. 2016;23:11–18.
  • Berry ET, McLaurin SE, Sparling JW. Parent/caregiver perspectives on the use of power wheelchairs. Pediatr Phys Ther. 1996;8:146–150.
  • Patton M. Qualitative evaluation and research method. 2nd ed. London: Sage Publications; 1990.
  • Miles MB, Huberman AM, Saldaña J. Qualitative data analysis. A methods sourcebook. 3rd ed. Thousand Oaks, CA: SAGE Publications; 2014.
  • Bazeley P. Qualiative data analysis: practical strategies. Thousand Oaks, CA: SAGE Publications; 2013.
  • Bray N, Noyes J, Edwards RT, et al. Wheelchair interventions, services and provision for disabled children: a mixed-method systematic review and conceptual framework. BMC Health Serv Res. 2014;14:309.
  • Boyer F, Drame M, Morrone I, et al. Factors relating to carer burden for families of persons with muscular dystrophy. J Rehabil Med. 2006;38:309–315.
  • Magliano L, Patalano M, Sagliocchi A, et al. Burden, professional support, and social network in families of children and young adults with muscular dystrophies. Muscle Nerve. 2015;52:13–21.
  • Goldstein LH, Adamson M, Jeffrey L, et al. The psychological impact of MND on patients and carers. J Neurol Sci. 1998;160:S114–S121.
  • Farrar MA, Teoh HL, Carey KA, et al. Nusinersen for SMA: expanded access programme. J Neurol Neurosurg Psychiatry. 2018;89(9):937-942.
  • Aho AC, Hultsjö S, Hjelm K. Experiences of being parents of young adults living with recessive limb-girdle muscular dystrophy from a salutogenic perspective. Neuromuscul Disord. 2017;27:585–595.
  • 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;29:355–367.
  • Vuillerot C, Girardot F, Payan C, et al. Monitoring changes and predicting loss of ambulation in Duchenne muscular dystrophy with the Motor Function Measure. Dev Med Child Neurol. 2010;52:60–65.
  • Bakker JPJ, De Groot IJM, Beelen A, et al. Predictive factors of cessation of ambulation in patients with Duchenne muscular dystrophy. Am J Phys Med Rehabil. 2002;81:906–912.
  • University of British Columbia. Wheelchair provision for children and adults with neuromuscular conditions in British Columbia. 2014 [cited 2018 August 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
  • Muscular Dystrophy UK. Wheelchair provision for children and adults with muscular dystrophy and other neuromuscular conditions: best practice guidelines. 2011 [cited 2018 August 15]. Available from: http://www.musculardystrophyuk.org/wp-content/uploads/2015/02/wheelchair-guidelines.pdf

Reprints and Corporate Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

To request a reprint or corporate permissions for this article, please click on the relevant link below:

Academic Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

Obtain permissions instantly via Rightslink by clicking on the button below:

If you are unable to obtain permissions via Rightslink, please complete and submit this Permissions form. For more information, please visit our Permissions help page.