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Case Report

Enhancing Function, Fun and Participation with Assistive Devices, Adaptive Positioning, and Augmented Mobility for Young Children with Infantile-Onset Spinal Muscular Atrophy: A Scoping Review and Illustrative Case Report

1
Sunny Hill Health Centre, Vancouver, BC V6H 3N1, Canada
2
Montgomery County Infants and Toddlers Program, Silver Spring, MD 20901, USA
*
Author to whom correspondence should be addressed.
Disabilities 2021, 1(1), 1-22; https://doi.org/10.3390/disabilities1010001
Received: 30 November 2020 / Revised: 2 January 2021 / Accepted: 13 January 2021 / Published: 22 January 2021
Recent advances in medical interventions have changed the prognosis for children with infantile-onset spinal muscular atrophy (SMA-1); however, little has been published regarding rehabilitation management. A rapid scoping review was conducted in November 2020 using Medline and CINAHL databases. Evidence supporting use of assistive devices and equipment to enhance participation, mobility, function, and posture in lying, sitting, and standing positions was sought. From 239 articles, only five studies (describing use of augmentative communication, manual and power mobility, supported standing and orthotic devices) met inclusion criteria. Results are presented alongside a case report of a 5-year-old boy (treated with Nusinersen since 7 months-of-age) who uses a variety of devices to enhance his activity and participation in family life. While reclined and tilted sitting positions as well as power mobility were previously considered for children with SMA-1, this child has progressed to supported upright standing, self-propelling a lightweight manual wheelchair indoors, communicating using multiple methods and taking steps in a dynamic mobility device. Power mobility was introduced in a switch-adapted cart at 11 months and he was independently exploring indoors and outside in his power wheelchair before 20 months. Research evidence is limited, but alongside the case report highlights the importance of a comprehensive and proactive approach to enhancing function, fun and participation with family and friends through adaptive equipment for children with significant and life-limiting disabilities. View Full-Text
Keywords: assistive technology; participation; durable medical equipment; wheelchair; power mobility; stander; supportive seating; postural management; supported standing; assistive devices; speech generating devices assistive technology; participation; durable medical equipment; wheelchair; power mobility; stander; supportive seating; postural management; supported standing; assistive devices; speech generating devices
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MDPI and ACS Style

Livingstone, R.; Paleg, G. Enhancing Function, Fun and Participation with Assistive Devices, Adaptive Positioning, and Augmented Mobility for Young Children with Infantile-Onset Spinal Muscular Atrophy: A Scoping Review and Illustrative Case Report. Disabilities 2021, 1, 1-22. https://doi.org/10.3390/disabilities1010001

AMA Style

Livingstone R, Paleg G. Enhancing Function, Fun and Participation with Assistive Devices, Adaptive Positioning, and Augmented Mobility for Young Children with Infantile-Onset Spinal Muscular Atrophy: A Scoping Review and Illustrative Case Report. Disabilities. 2021; 1(1):1-22. https://doi.org/10.3390/disabilities1010001

Chicago/Turabian Style

Livingstone, Roslyn, and Ginny Paleg. 2021. "Enhancing Function, Fun and Participation with Assistive Devices, Adaptive Positioning, and Augmented Mobility for Young Children with Infantile-Onset Spinal Muscular Atrophy: A Scoping Review and Illustrative Case Report" Disabilities 1, no. 1: 1-22. https://doi.org/10.3390/disabilities1010001

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