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

doi:10.1016/j.nmd.2019.01.010

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

Neuromuscul Disord. 2019 Mar;29(3):221-230. doi: 10.1016/j.nmd.2019.01.010. Epub 2019 Feb 2.

Authors

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

Affiliations

¹ Telethon Kids Institute, University of Western Australia, PO Box 855, West Perth, WA 6872, Australia.
² Novita, 171 Days Road, Regency Park, SA 5010, Australia.
³ 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.
⁴ Department of Neurology, Queensland Children's Hospital, PO Box 3474, South Brisbane, QLD 4101, Australia.
⁵ Department of Neurology, Women's and Children's Hospital, 72 King William Rd, North Adelaide, SA 5006, Australia.
⁶ Department of Neurology, Royal Children's Hospital, 50 Flemington Rd, Parkville, Vic 3052, Australia.
⁷ 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.
⁸ Department of Neurology, Perth Children's Hospital, 15 Hospital Avenue, Nedlands, Locked Bag 2010, Nedlands, WA 6909, Australia.
⁹ School of Physiotherapy and Exercise Science, Curtin University, GPO Box U1987, Perth, WA 6845, Australia.
¹⁰ Therapy Focus, PO Box 20, Bentley, WA 6982, Australia.
¹¹ Rocky Bay, 13 Baling Street, Cockburn, WA 6164, Australia.
¹² Montrose Therapy and Respite Services, Level 2 20 Innovation Parkway, Buddina, QLD 4575, Australia.
¹³ Save Our Sons Duchenne Foundation, Shop 3/570, New Canterbury Road, Hurlstone Park, NSW 2193, Australia.
¹⁴ 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.

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

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.

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

Publication types

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

MeSH terms

Adolescent
Child
Community Participation / methods
Female
Humans
Male
Muscle Weakness / physiopathology*
Muscle Weakness / rehabilitation
Muscular Dystrophy, Duchenne / physiopathology*
Neuromuscular Diseases / rehabilitation
Parents / psychology
Self-Help Devices*
Wheelchairs*