Literature DB >> 30826157

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

Nitamarie Vorster1, Kerry Evans2, Nada Murphy1, Maina Kava3, Anita Cairns4, Damian Clarke5, Monique M Ryan6, Aris Siafarikas7, Peter W Rowe8, Stephanie Parkinson9, Odette Gaynor10, Linda Chiu11, Janine Anderson12, Klair Bayley13, Peter Jacoby1, Donna Cross1, Jenny Downs14.   

Abstract

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

Entities:  

Keywords:  Duchenne muscular dystrophy; Powered wheelchair; Qualitative; Quality of life; Standing

Mesh:

Year:  2019        PMID: 30826157     DOI: 10.1016/j.nmd.2019.01.010

Source DB:  PubMed          Journal:  Neuromuscul Disord        ISSN: 0960-8966            Impact factor:   4.296


  5 in total

1.  Understanding Symptoms in RYR1-Related Myopathies: A Mixed-Methods Analysis Based on Participants' Experience.

Authors:  Carlos Capella-Peris; Mary M Cosgrove; Irene C Chrismer; M Sonia Razaqyar; Jeffrey S Elliott; Anna Kuo; Magalie Emile-Backer; Katherine G Meilleur
Journal:  Patient       Date:  2020-08       Impact factor: 3.883

2.  Powered mobility interventions for very young children with mobility limitations to aid participation and positive development: the EMPoWER evidence synthesis.

Authors:  Nathan Bray; Niina Kolehmainen; Jennifer McAnuff; Louise Tanner; Lorna Tuersley; Fiona Beyer; Aimee Grayston; Dor Wilson; Rhiannon Tudor Edwards; Jane Noyes; Dawn Craig
Journal:  Health Technol Assess       Date:  2020-10       Impact factor: 4.014

3.  Mixed methods analysis of Health-Related Quality of Life in ambulant individuals affected with RYR1-related myopathies pre-post-N-acetylcysteine therapy.

Authors:  Carlos Capella-Peris; Mary M Cosgrove; Irene C Chrismer; Magalie Emile-Backer; M Sonia Razaqyar; Jeffrey S Elliott; Anna Kuo; Paul G Wakim; Katherine G Meilleur
Journal:  Qual Life Res       Date:  2020-02-10       Impact factor: 4.147

4.  Policy analysis on power standing systems.

Authors:  Cara E Masselink; Nicole LaBerge; Ashley Detterbeck
Journal:  Prev Med Rep       Date:  2021-10-12

5.  Transition from Childhood to Adulthood in Patients with Duchenne Muscular Dystrophy.

Authors:  Eliza Wasilewska; Sylwia Małgorzewicz; Agnieszka Sobierajska-Rek; Joanna Jabłońska-Brudło; Lucyna Górska; Karolina Śledzińska; Joanna Bautembach-Minkowska; Jolanta Wierzba
Journal:  Medicina (Kaunas)       Date:  2020-08-24       Impact factor: 2.430

  5 in total

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