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

Nitamarie Vorster, Kerry Evans, Nada Murphy, Maina Kava, Anita Cairns, Damian Clarke, Monique M. Ryan, Aris Siafarikas, Peter W. Rowe, Stephanie Parkinson, Odette Gaynor, Linda Chiu, Janine Anderson, Klair Bayley, Peter Jacoby, Donna Cross, Jenny Downs

Research output: Contribution to journalArticle

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.

Original languageEnglish
Pages (from-to)221-230
Number of pages10
JournalNeuromuscular Disorders
Volume29
Issue number3
DOIs
Publication statusPublished - 1 Mar 2019

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Wheelchairs
Duchenne Muscular Dystrophy
Muscle Weakness
Equipment and Supplies
Health
Parents
Motor Skills
Interviews
Community Participation
Therapeutics

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Vorster, Nitamarie ; Evans, Kerry ; Murphy, Nada ; Kava, Maina ; Cairns, Anita ; Clarke, Damian ; Ryan, Monique M. ; Siafarikas, Aris ; Rowe, Peter W. ; Parkinson, Stephanie ; Gaynor, Odette ; Chiu, Linda ; Anderson, Janine ; Bayley, Klair ; Jacoby, Peter ; Cross, Donna ; Downs, Jenny. / Powered standing wheelchairs promote independence, health and community involvement in adolescents with Duchenne muscular dystrophy. In: Neuromuscular Disorders. 2019 ; Vol. 29, No. 3. pp. 221-230.
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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.",
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Vorster, N, Evans, K, Murphy, N, Kava, M, Cairns, A, Clarke, D, Ryan, MM, Siafarikas, A, Rowe, PW, Parkinson, S, Gaynor, O, Chiu, L, Anderson, J, Bayley, K, Jacoby, P, Cross, D & Downs, J 2019, 'Powered standing wheelchairs promote independence, health and community involvement in adolescents with Duchenne muscular dystrophy' Neuromuscular Disorders, vol. 29, no. 3, pp. 221-230. https://doi.org/10.1016/j.nmd.2019.01.010

Powered standing wheelchairs promote independence, health and community involvement in adolescents with Duchenne muscular dystrophy. / Vorster, Nitamarie; Evans, Kerry; Murphy, Nada; Kava, Maina; Cairns, Anita; Clarke, Damian; Ryan, Monique M.; Siafarikas, Aris; Rowe, Peter W.; Parkinson, Stephanie; Gaynor, Odette; Chiu, Linda; Anderson, Janine; Bayley, Klair; Jacoby, Peter; Cross, Donna; Downs, Jenny.

In: Neuromuscular Disorders, Vol. 29, No. 3, 01.03.2019, p. 221-230.

Research output: Contribution to journalArticle

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T1 - Powered standing wheelchairs promote independence, health and community involvement in adolescents with Duchenne muscular dystrophy

AU - Vorster, Nitamarie

AU - Evans, Kerry

AU - Murphy, Nada

AU - Kava, Maina

AU - Cairns, Anita

AU - Clarke, Damian

AU - Ryan, Monique M.

AU - Siafarikas, Aris

AU - Rowe, Peter W.

AU - Parkinson, Stephanie

AU - Gaynor, Odette

AU - Chiu, Linda

AU - Anderson, Janine

AU - Bayley, Klair

AU - Jacoby, Peter

AU - Cross, Donna

AU - Downs, Jenny

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Y1 - 2019/3/1

N2 - 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.

AB - 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.

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