Co-creating a practical therapy resource for rehabilitation therapists working with children with Spinal Muscular Atrophy (SMA) treated with genetic based therapies (recruiting)
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.
Researcher(s)
Dr. Laura McAdam
Call to action
Are you involved in rehabilitation therapy for children with SMA treated with a disease-modifying 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 disease-modifying therapy
- Accessed public or private rehabilitation services
- Communicates in English
Has access to technology to join a virtual focus group or is able to attend an in-person focus group at Holland Bloorview Kids Rehabilitation Hospital
Therapists
- Occupational or physical therapist with active rehabilitation experience with children with SMA treated with disease-modifying therapies
- Worked with at least 2 children with SMA treated with a disease-modifying therapy in the past 3 years OR 1 child with SMA treated with a disease-modifying therapy for at least 6 months
- Communicates in English
Funding agency
AFP Innovation Fund
What's involved
Caregivers and therapists will join 60-90-minute 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 disease-modifying 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 disease-modifying 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.
