Self-Efficacy Enhancement Using a Multicomponent Support Group for Caregivers of Children With DMD/SMA

ConditionsDuchenne Muscular Dystrophy (DMD)Spinal Muscular Atrophy (SMA)

Trial statusNot yet recruiting

Trial phaseNot applicable

Trial typeInterventional

Biological sexAll

AgeNot listed

SponsorAga Khan University

About this trial

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)

Eligibility criteria

This trial accepts healthy volunteers

Qualifiers

Primary caregiver of a child diagnosed with SMA or DMD.

Enrolled in the Treat-NMD registry- Pakistan.

Access to a smart phone with internet connectivity.

Disqualifiers

Caregivers who are currently participating in another support group intervention.

Caregivers who are unable to understand the language of communication (Urdu)

Trial design

Design model

Single group

Treatments tested in this trial

Multicomponent Support Group
Behavioral
A multifaceted strategy will be employed. Multiple groups will be created for SMA and DMD patients. Each group will include up to 10 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 session with each group will be 1 hours duration. It will start with 5 minutes talk from each expert about the basic needs for SMA and DMD patients. Following the first session, after a few weeks gap, another similar 1 hour session will be conducted which will be open to care givers to ask questions off the specialists or other care givers. In between these 2 sessions, short videos or pictorial clips for care will be sent to the participants to re-enforce what they learnt from sessions.

Treatment groups

30 Participants

are divided into 1 treatment group

Group A: Multicomponent Support Group Intervention for Caregivers of Children with DMD or SMAExperimental treatment 1 intervention

Trial outcomes

Primary outcomes

Change in Self-Efficacy Scores

Change from Baseline in the Self-Efficacy Scores at 8 weeks. Care giver self efficacy tool is a 19-item self-report questionnaire adapted from the original validated scale developed for caregivers of individuals with DMD (DMD-CSES). The scale assesses caregiver self-efficacy across multiple domains of caregiving. Each item is rated on a 5-point Likert scale ranging from 1 (Strongly disagree) to 5 (Strongly agree). Total scores range from 19 to 95, calculated by summing responses across all items. Higher scores indicate greater caregiver self-efficacy (better outcome).

Time frame

Baseline and 8 weeks

Locations

This trial has no locations.

Sponsors and contacts

Click on the lead sponsor to view all of their trials.

Aga Khan University

Lead sponsor

Source ClinicalTrials.gov

This trial is not recruiting at the moment. You can still explore other options: