The Cost of Isolation

A Protocol for Exploring the Experiences of Family Caregivers

Abstract

Background: Recent research has found that family (e.g., informal, unpaid) caregivers to those in long-term care can experience significant risk of social isolation, a harmful social outcome linked to poor health and wellbeing. For many, the COVID-19 global pandemic has been a time marked by challenges that have exacerbated existing risk of social isolation and has likely impacted mental health and wellbeing among caregivers. As such, this paper outlines a protocol to investigate the extent to which the COVID-19 pandemic has impacted the psychological health and well-being of family caregivers of people living in residential long-term care.

Methods/Design: A descriptive phenomenological design and photovoice methodology will be used alongside focus groups to capture the perspectives and voices of 15-20 family caregivers. Data will be analyzed thematically, and themes will be developed collaboratively alongside participants. A secondary analysis will be guided by a cumulative inequality lens to consider how the COVID-19 pandemic has differentially affected caregivers.

Discussion: The results will fill a significant gap in the existing literature on caregiver isolation during this pandemic and inform the development and/or refinement of caregiver supports.