Co-creating a practical resource for families and clinicians about rehabilitation therapy for children with Spinal Muscular Atrophy (SMA) treated with a genetic-based therapy
Summary
Our team is conducting focus groups with caregivers and therapists to understand the needs and wants of those involved in rehabilitation care, and to create a resource for those with minimal experience.
Call to action
Are you involved in rehabilitation therapy for children with SMA treated with a genetic-based therapy as a caregiver or therapist? Consider participating in a research study to inform a resource to support those with less experience.
Who can participate
Caregivers
- Of a child with SMA treated with a genetic-based therapy
- Accessed publicly funded rehabilitation services
- Communicates in English
- Has access to technology to join a virtual focus group
Therapists
- Occupational or physical therapist with experience working with children with SMA treated with genetic-based therapies in publicly funded settings
- Worked with at least 2 children with SMA treated with a genetic-based therapy in the past 2 years
- Communicates in English
- Has access to technology to join a virtual focus group
Funding agency
AFP Innovation Fund
What's involved
Caregivers and therapists will join 90-minute virtual focus groups. Caregivers will explore what is important to them when their child receives rehabilitation therapy. Therapist focus groups will explore planning and adaptations when working with children with SMA treated with a genetic-based therapy. All participants will complete a demographics survey.
Therapists only: Optionally, therapists may complete surveys and an interview during a therapy block with a child with SMA treated with a genetic-based therapy to provide practical examples for the resource.
Deadline
Interested in participating
If you are interested in participating in this study or have additional questions, please contact the Neuromuscular Research Team at neuromuscular.research@hollandbloorview.ca/416-425-6220 extension 6943.
Additional information
Version 1 (04Jul2024) REB# 0717
