Neuromuscular Diseases
Conditions
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.
Interventions
BEHAVIORALThe Virtual Peer Support Program
Training: We have previously developed and beta-tested a virtual peer mentor training program adapted from the St. Jude's Research Hospital's (Memphis, USA) program for FCs of children with cancer for adults using HMV. Content \& Design of the Virtual Peer-Support Program: The program will be delivered by the aTouchAway™ App used for the LIVE program. Participants will be requested to access peer mentors ≥1 time/week. Participants can choose to interact with a peer mentor which will be assigned as well as other peer participants. Onboarding: Participants and mentors will create a personal profile of their caregiving situation (e.g., duration of care, family member age and diagnosis), to enable selection of mentors by the research team believed to be well suited to address support needs, questions, and concerns based on similar lived experience.
Sponsors
The Hospital for Sick Children
Study design
Allocation
RANDOMIZED
Intervention model
SEQUENTIAL
Primary purpose
HEALTH_SERVICES_RESEARCH
Masking
NONE
Eligibility
Sex/Gender
ALL
Healthy volunteers
No
Inclusion criteria
Eligibility Criteria for Peer-Support Program: Inclusion Criteria 1. FC of individual with NMD that lives in Canada; 2. Speaks and reads English; 3. Access to internet and computer/tablet.
Exclusion criteria
We will exclude those Ventilator Assisted Individuals (VAI) and caregivers, who are: 1. Unable to communicate verbally in English 2. No access to internet and computer/tablet. Eligibility Criteria for Peer Mentors: Inclusion Criteria: 1. Criteria 1-3 above; 2. Completion of virtual peer support training; 3. Identified by the HMV team or self-referral.
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| 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
| Measure | Time frame | Description |
|---|---|---|
| Caregiver Competency - measured using the Caregiving Competence Scale | Baseline | 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 | Baseline | 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 | Baseline | Family Caregiver Depression and Anxiety: measured using the Depression and Anxiety scores range up to 42, higher scores = higher depression and Anxiety)Stress Scale |
| Family Caregiver Experience of the virtual peer support explored using qualitative interviews. | Baseline | Family Caregiver Experience of the virtual peer support explored using qualitative interviews. |
Countries
Canada
Contacts
PRINCIPAL_INVESTIGATORReshma Amin, MD
The Hospital for Sick Children
Outcome results
None listed