Connecting Caregivers: A Randomized Controlled Trial to Evaluate Virtual Peer-Support for Family Caregivers of Individuals With Neuromuscular Disease
Overview
- Phase
- Not Applicable
- Intervention
- Not specified
- Conditions
- Neuromuscular Diseases
- Sponsor
- The Hospital for Sick Children
- Enrollment
- 100
- Locations
- 1
- Primary Endpoint
- Family Caregiver (FC) mastery measured using the Pearlin Mastery Scale (PMS)
- Status
- Completed
- Last Updated
- 11 months ago
Overview
Brief Summary
Competent family caregivers (FC) are essential for successful caring for individuals with NMD. However, family caregiving is known to contribute to significant FC burden and social isolation, and negatively affects FC health. Infrastructure to support FCs is paramount to ensure that individuals with NMD can safely remain at home. Individuals with NMD have complex health problems, require a lot of care and they use the healthcare system often. COVID-19 physical distancing has increased the care burden and social isolation for many FCs. Infrastructure to support FCs is paramount to ensure that individuals with NMD can safely remain at home. Peer support includes emotional and informational support by an individual that has experienced a similar health problem. It improves health-related quality of life, increases self-efficacy and empowerment, and decreases stress in various patient and caregiver populations. With our study we plan to educate and empower individuals with NMD and their caregivers and develop a comprehensive peer support program.
Investigators
Reshma Amin
Associate Professor
The Hospital for Sick Children
Eligibility Criteria
Inclusion Criteria
- •Criteria 1-3 above;
- •Completion of virtual peer support training;
- •Identified by the HMV team or self-referral.
Exclusion Criteria
- •We will exclude those VAIs and caregivers, who are:
- •Unable to communicate verbally in English
- •No access to internet and computer/tablet.
Outcomes
Primary Outcomes
Family Caregiver (FC) mastery measured using the Pearlin Mastery Scale (PMS)
Time Frame: baseline
FC mastery measured using the Pearlin Mastery Scale (PMS) (Pearlin Mastery Scale;(scores range up to 28, higher scores = higher mastery) at baseline,
Family Caregiver (FC) mastery measured using the Pearlin Mastery Scale (PMS) at12 weeks
Time Frame: 12 week
(FC) mastery measured using the Pearlin Mastery Scale (PMS) at12 weeks (Pearlin Mastery Scale; (scores range up to 28, higher scores = higher mastery)
Family Caregiver (FC) mastery measured using the Pearlin Mastery Scale (PMS) at 24 weeks
Time Frame: 24 week
(FC) mastery measured using the Pearlin Mastery Scale (PMS) at 24 weeks (Pearlin Mastery Scale; (scores range up to 28, higher scores = higher mastery)
Secondary Outcomes
- Family Caregiver Experience of the virtual peer support explored using qualitative interviews.(24 week)
- Caregiver Competency - measured using the Caregiving Competence Scale(24 week)
- Family Caregiver Burden and Stress - measured using the Zarit Burden Interview(24 week)
- Family Caregiver Depression and Anxiety: measured using the Depression and Anxiety Stress Scale(24 week)