The Peer Support Study
- Conditions
- Neuromuscular Diseases
- Interventions
- Behavioral: The Virtual Peer Support Program
- Registration Number
- NCT05070624
- Lead Sponsor
- The Hospital for Sick Children
- 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.
- Detailed Description
Not available
Recruitment & Eligibility
- Status
- ACTIVE_NOT_RECRUITING
- Sex
- All
- Target Recruitment
- 100
- Criteria 1-3 above;
- Completion of virtual peer support training;
- Identified by the HMV team or self-referral.
We will exclude those VAIs and caregivers, who are:
- Unable to communicate verbally in English
- No access to internet and computer/tablet.
Study & Design
- Study Type
- INTERVENTIONAL
- Study Design
- SEQUENTIAL
- Arm && Interventions
Group Intervention Description Intervention The Virtual Peer Support Program After informed consent, we will assign participants in a 1:1 ratio to the intervention or control group using Randomize.net. Participants randomized to intervention group will get access to the Virtual Peer Support Program.
- Primary Outcome Measures
Name Time Method Family Caregiver (FC) mastery measured using the Pearlin Mastery Scale (PMS) 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 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 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 Outcome Measures
Name Time Method Family Caregiver Experience of the virtual peer support explored using qualitative interviews. 24 week Family Caregiver Experience of the virtual peer support explored using qualitative interviews.
Caregiver Competency - measured using the Caregiving Competence Scale 24 week Caregiver Competency - measured using the Caregiving Competence Scale, The total scores of this 4-item scale ranged from 4 to 16, with higher scores indicating higher levels of caregiving competence
Family Caregiver Burden and Stress - measured using the Zarit Burden Interview 24 week Family Caregiver Burden and Stress - measured using the Zarit Burden Interview scores range up to 88, higher scores = higher burden)
Family Caregiver Depression and Anxiety: measured using the Depression and Anxiety Stress Scale 24 week Family Caregiver Depression and Anxiety: measured using the Depression and Anxiety scores range up to 42, higher scores = higher depression and Anxiety)Stress Scale
Trial Locations
- Locations (1)
The Hospital for Sick Children
🇨🇦Toronto, Ontario, Canada