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.
Study Type
INTERVENTIONAL
Allocation
RANDOMIZED
Purpose
HEALTH_SERVICES_RESEARCH
Masking
NONE
Enrollment
100
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.
The Hospital for Sick Children
Toronto, Ontario, Canada
Family Caregiver (FC) mastery measured using the Pearlin Mastery Scale (PMS)
FC mastery measured using the Pearlin Mastery Scale (PMS) (Pearlin Mastery Scale;(scores range up to 28, higher scores = higher mastery) at baseline,
Time frame: baseline
Family Caregiver (FC) mastery measured using the Pearlin Mastery Scale (PMS) at12 weeks
(FC) mastery measured using the Pearlin Mastery Scale (PMS) at12 weeks (Pearlin Mastery Scale; (scores range up to 28, higher scores = higher mastery)
Time frame: 12 week
Family Caregiver (FC) mastery measured using the Pearlin Mastery Scale (PMS) at 24 weeks
(FC) mastery measured using the Pearlin Mastery Scale (PMS) at 24 weeks (Pearlin Mastery Scale; (scores range up to 28, higher scores = higher mastery)
Time frame: 24 week
Caregiver Competency - measured using the Caregiving Competence Scale
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
Time frame: Baseline
Caregiver Competency - measured using the Caregiving Competence Scale
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
Time frame: 12 week
Caregiver Competency - measured using the Caregiving Competence Scale
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
Time frame: 24 week
Family Caregiver Burden and Stress - measured using the Zarit Burden Interview
Family Caregiver Burden and Stress - measured using the Zarit Burden Interview (scores range up to 88, higher scores = higher burden)
Time frame: Baseline
Family Caregiver Burden and Stress - measured using the Zarit Burden Interview
Family Caregiver Burden and Stress - measured using the Zarit Burden Interview scores range up to 88, higher scores = higher burden)
Time frame: 12 week
Family Caregiver Burden and Stress - measured using the Zarit Burden Interview
Family Caregiver Burden and Stress - measured using the Zarit Burden Interview scores range up to 88, higher scores = higher burden)
Time frame: 24 week
Family Caregiver Depression and Anxiety: measured using the Depression and Anxiety Stress Scale
Family Caregiver Depression and Anxiety: measured using the Depression and Anxiety scores range up to 42, higher scores = higher depression and Anxiety)Stress Scale
Time frame: Baseline
Family Caregiver Depression and Anxiety: measured using the Depression and Anxiety Stress Scale
Family Caregiver Depression and Anxiety: measured using the Depression and Anxiety scores range up to 42, higher scores = higher depression and Anxiety)Stress Scale
Time frame: 12 week
Family Caregiver Depression and Anxiety: measured using the Depression and Anxiety Stress Scale
Family Caregiver Depression and Anxiety: measured using the Depression and Anxiety scores range up to 42, higher scores = higher depression and Anxiety)Stress Scale
Time frame: 24 week
Family Caregiver Experience of the virtual peer support explored using qualitative interviews.
Family Caregiver Experience of the virtual peer support explored using qualitative interviews.
Time frame: Baseline
Family Caregiver Experience of the virtual peer support explored using qualitative interviews.
Family Caregiver Experience of the virtual peer support explored using qualitative interviews.
Time frame: 12 week
Family Caregiver Experience of the virtual peer support explored using qualitative interviews.
Family Caregiver Experience of the virtual peer support explored using qualitative interviews.
Time frame: 24 week
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