Resiliency and vulnerability of Young Caregivers: A longitudinal study of their navigation through COVID-19

The study is a collaboration with Toronto Metropolitan University (formerly Ryerson University), Brock University, Young Caregivers Association, and Young Carers Program Toronto. More than 8 million Canadians provide informal unpaid care to a family member or friend with injury, disability, or illness. Ontario alone has an estimated 3.3 million family caregivers and of these, 17% are young caregivers (15-25 yoa) who provide physical, medical, and emotional support to a parent, grandparent, or sibling while juggling school and sometimes paid work. Most Canadians are unaware of the responsibilities and challenges faced by these ‘invisible’ caregivers and they are a severely understudied group in Canada. Lacking adequate support, they can experience short- and long-term harms to academic, personal, social, and professional development (the ‘young carer penalty’). Lack of support can also contribute to stress and depression, low self-esteem, anxiety, loneliness and isolation, difficulty relating to peers, and possibly suicidal ideation among young caregivers. Through our SSHRC Partner Engage Grant, we have learned that the COVID-19 pandemic has exacerbated issues for young carers and their families and this group is particularly vulnerable to disruptions in schooling and employment. We propose to examine factors influencing young caregivers and their families’ response to COVID during isolation, closures, and reopening(s). We will also identify strategies to address young caregiver’s needs in order to support families in the short-term and long-term. The study builds on previous scholarship and our own work in this area, and addresses key knowledge, policy, and practice gaps identified by stakeholders across Canada. 

     Our study is guided by an intersectional perspective and an ecological framework to critically examine the complexity of multiple dimensions of social identity and how these interrelate at the micro, meso, and macro levels. Consistent with our theoretical framework, we will use a collaborative, community-based, mixed-methods approach to enable stakeholders to actively determine which resiliency and vulnerability factors influence(d) young caregivers and their families’ response to COVID including decisions about schooling and work.

     We will conduct semi-structured interviews with young caregivers from rural and urban communities in Ontario at baseline (retrospectively) and 6 months, 1 year, 2 years. We will also collect data from each of their family members via group interviews and conduct focus groups with informal community leaders/changemakers and service providers to identify the work currently being done to support young caregivers and the challenges surrounding this work. Finally, policy/decision makers will be interviewed to understand the key players in policy development and the challenges surrounding policy development that is inclusive of young caregivers and their families during a time where timely policy making can prevent the collapse of livelihoods. Data will be analyzed at the level of individual interviews, family units, and groups/subgroups; rural and urban settings will be compared to identify common and unique characteristics and experiences related to COVID’s impact on young caregivers and their families and how challenges were navigated and changes were adapted to. 

     The proposed approach is comprehensive, incorporating local knowledge and expert contributions from young caregivers, parents, loved ones, community leaders/changemakers, service providers, and policymakers at each phase of the study. Findings will contribute empirically and theoretically, as well as to policy debate and practice change, which will have local, national, and international significance. Our extensive KMb plan will ensure that our research contributes to the well-being and social needs of young caregivers and their families, while strengthening the work being accomplished by community leaders, service providers, policy/decision makers, and key stakeholders who work for/with this group to spark change.

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This study was funded by the Social Sciences and Humanities Research Council.