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.
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Family Caregiver (FC) mastery measured using the Pearlin Mastery Scale (PMS)
Timeframe: baseline
Family Caregiver (FC) mastery measured using the Pearlin Mastery Scale (PMS) at12 weeks
Timeframe: 12 week
Family Caregiver (FC) mastery measured using the Pearlin Mastery Scale (PMS) at 24 weeks
Timeframe: 24 week