| Literature DB >> 30826157 |
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. CrownEntities:
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