Powered standing wheelchairs promote independence, health and community involvement in adolescents with Duchenne muscular dystrophy.


Journal

Neuromuscular disorders : NMD
ISSN: 1873-2364
Titre abrégé: Neuromuscul Disord
Pays: England
ID NLM: 9111470

Informations de publication

Date de publication:
03 2019
Historique:
received: 21 07 2018
revised: 11 01 2019
accepted: 29 01 2019
pubmed: 4 3 2019
medline: 2 6 2020
entrez: 4 3 2019
Statut: ppublish

Résumé

Duchenne muscular dystrophy is a common neuromuscular disorder involving progressive muscle weakness. A powered wheelchair standing device provides capacity to stand despite increasing muscle weakness. This study used qualitative methods to explore how adolescents with Duchenne muscular dystrophy used a powered wheelchair standing device in their daily lives. Semi-structured interviews were conducted with 12 adolescents, 11 parents and 11 teachers. Qualitative thematic analysis using a grounded theory framework was conducted to identify emerging domains. "Capacity to be able" was the central theme that emerged across the dataset: the introduction of the powered wheelchair standing device at a time when motor skills were declining enabled the adolescent to maintain and sometimes extend his independence. There were four underlying themes including (1) Independence, (2) Health, (3) Comfort, and (4) Community belonging and involvement. Each theme was illustrated in data collected from adolescents, parents and teachers. The device appeared to mitigate some of the challenges of progressive muscle weakness by providing the option for the individual with Duchenne muscular dystrophy to choose when and where to stand for participation in a range of activities, beyond what would be possible with existing therapeutic regimes involving standing frames.

Identifiants

pubmed: 30826157
pii: S0960-8966(18)31024-1
doi: 10.1016/j.nmd.2019.01.010
pii:
doi:

Types de publication

Journal Article Research Support, Non-U.S. Gov't

Langues

eng

Sous-ensembles de citation

IM

Pagination

221-230

Informations de copyright

Crown Copyright © 2019. Published by Elsevier B.V. All rights reserved.

Auteurs

Nitamarie Vorster (N)

Telethon Kids Institute, University of Western Australia, PO Box 855, West Perth, WA 6872, Australia.

Kerry Evans (K)

Novita, 171 Days Road, Regency Park, SA 5010, Australia.

Nada Murphy (N)

Telethon Kids Institute, University of Western Australia, PO Box 855, West Perth, WA 6872, Australia.

Maina Kava (M)

Department of Neurology, Perth Children's Hospital, 15 Hospital Avenue, Nedlands, Locked Bag 2010, Nedlands, WA 6909, Australia; School of Paediatrics and Child Health, University of Western Australia, Australia.

Anita Cairns (A)

Department of Neurology, Queensland Children's Hospital, PO Box 3474, South Brisbane, QLD 4101, Australia.

Damian Clarke (D)

Department of Neurology, Women's and Children's Hospital, 72 King William Rd, North Adelaide, SA 5006, Australia.

Monique M Ryan (MM)

Department of Neurology, Royal Children's Hospital, 50 Flemington Rd, Parkville, Vic 3052, Australia.

Aris Siafarikas (A)

Telethon Kids Institute, University of Western Australia, PO Box 855, West Perth, WA 6872, Australia; Department of Endocrinology, Perth Children's Hospital, 15 Hospital Avenue, Nedlands, Locked Bag 2010, Nedlands, WA 6909, Australia.

Peter W Rowe (PW)

Department of Neurology, Perth Children's Hospital, 15 Hospital Avenue, Nedlands, Locked Bag 2010, Nedlands, WA 6909, Australia.

Stephanie Parkinson (S)

School of Physiotherapy and Exercise Science, Curtin University, GPO Box U1987, Perth, WA 6845, Australia.

Odette Gaynor (O)

Therapy Focus, PO Box 20, Bentley, WA 6982, Australia.

Linda Chiu (L)

Rocky Bay, 13 Baling Street, Cockburn, WA 6164, Australia.

Janine Anderson (J)

Montrose Therapy and Respite Services, Level 2 20 Innovation Parkway, Buddina, QLD 4575, Australia.

Klair Bayley (K)

Save Our Sons Duchenne Foundation, Shop 3/570, New Canterbury Road, Hurlstone Park, NSW 2193, Australia.

Peter Jacoby (P)

Telethon Kids Institute, University of Western Australia, PO Box 855, West Perth, WA 6872, Australia.

Donna Cross (D)

Telethon Kids Institute, University of Western Australia, PO Box 855, West Perth, WA 6872, Australia.

Jenny Downs (J)

Telethon Kids Institute, University of Western Australia, PO Box 855, West Perth, WA 6872, Australia; School of Physiotherapy and Exercise Science, Curtin University, GPO Box U1987, Perth, WA 6845, Australia. Electronic address: jenny.downs@telethonkids.org.au.

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Classifications MeSH