Powered standing wheelchairs promote independence, health and community involvement in adolescents with Duchenne muscular dystrophy.
Duchenne muscular dystrophy
Powered wheelchair
Qualitative
Quality of life
Standing
Journal
Neuromuscular disorders : NMD
ISSN: 1873-2364
Titre abrégé: Neuromuscul Disord
Pays: England
ID NLM: 9111470
Informations de publication
Date de publication:
03 2019
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
221-230Informations de copyright
Crown Copyright © 2019. Published by Elsevier B.V. All rights reserved.