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Self-Efficacy Enhancement Among Online Support Group of Primary Caregivers of Children With Neuro Muscular Dystrophy
Sponsor: Aga Khan University
Summary
The goal of this clinical trial is to learn if providing a multicomponent intervention improves the confidence of caregivers of children with DMD or SMA. The main question it aims to answer is: Does this intervention increase their self-efficacy scores over 8 weeks time? Researchers will compare scores at baseline (pre intervention) and after 8 weeks (post intervention)
Official title: A Pre-Post Single-Arm Pilot Trial of a Digital Multicomponent Intervention for Self-Efficacy Enhancement Among Online Support Groups of Primary Caregivers of Children With Neuro-Muscular Disorders: SEE-NMD Protocol
Key Details
Gender
All
Age Range
Any - 18 Years
Study Type
INTERVENTIONAL
Enrollment
34
Start Date
2026-08-15
Completion Date
2026-12-04
Last Updated
2026-10-09
Healthy Volunteers
Yes
Interventions
Multicomponent Intervention
Multiple support groups will be created for SMA and DMD patients, separately. Within SMA and DMD, further subgroups will be created on the basis of caregivers educational level and socioeconomic background. Each support group will include up to 10-14 patients' caregivers, 1 neurologist, 1 pediatric neurologist, 1 physiotherapist, 1 nutritionist, 1 speech therapist, 1 occupational therapist, 1 epidemiologist and 1 Research Associate. Sessions with each group will integrate peer support, coaching to address the multifaceted needs of patients, and time for open questions and answer sessions with the group. The sessions with each group will be 30-60 minutes in duration. In between these live sessions, short video clips, pictorial guides, audios will be sent to the participants to re-enforce what they could learn to improve care of their child and potentially increase their self-efficacy levels.
Locations (1)
Aga Khan University
Karachi, Sindh, Pakistan