No Young Carer Left Behind: A Two-Phased Study to Understand and Address the Needs of Young Carers from Rural and Urban Communities Before and During Covid-19

Abstract

Canada has one of the largest cohorts of young carers aged 15 to 24 who provide unpaid care for a family member. Although the body of research on young carers is growing in Canada, knowledge on the experiences and needs of young carers living in remote and rural communities is almost absent. This study aimed to understand and address the needs of young carers in rural/remote communities to support our community partner’s goal of expanding their resources and support of this underserved population. The study was conducted in two phases with the first phase being a needs assessment and the second phase addressed those needs. In Phase 1 (conducted pre-COVID-19), three focus groups were conducted with young carers from rural and urban communities with 20 young carers participating in total. Six themes were identified: Internet Usage in Daily Life; Finding and Filtering Information; Concerns Related to Internet Use; Social and Mental Support; What Makes Caregiving More Challenging; and Designing Something to Make Caring Easier. During Phase 2 (conducted mid-COVID-19), 2 focus groups were held via Zoom for Healthcare with a mix of rural and urban young carers in each group. One of the focus groups was held with those under 18 years old and the other included those between 18 to 25 years old. Four themes were identified: Responses to Emergencies; Awareness of Emergency Planning; Potential Impact on Planned Behaviour; and Considerations and Suggestions for Improvement.

The Impact of Public Health Restrictions on Young Caregivers and How They Navigated a Pandemic: Baseline Interviews from a Longitudinal Study Conducted in Ontario, Canada

“…For example, caregiving responsibilities were reported to be unchanged (i.e., being homeschooled prior to the pandemic meant there was not a big disruption during the pandemic), decreased (i.e., due to less travel to appointments with pandemic lockdowns), and increased (i.e., household chores, meal preparation, mixing of school and caregiving time). This aligns with previous research highlighting the differences in lived experiences of young caregivers in the Canadian context as a non-homogenous group [13,15,21,40,[43][44][45].…”

“…In total, 14 young caregivers joined the study. The social determinants of health [35,36] with intersectionality [37][38][39] guided the development of our interview guide alongside the lessons and findings we gleaned from a study we conducted on the experiences, challenges, and needs of young caregivers living in urban versus rural communities in Ontario, Canada [40]. Importantly, we acknowledge there is significant diversity in young caregiver populations and recognize this is not a homogeneous group.…”

Voices from Service Providers Who Supported Young Caregivers throughout the COVID-19 Pandemic in the Canadian Context

“…Findings suggested that regional variations were significant in the availability of services, support, and experiences of young caregiver clients and their families during the COVID-19 pandemic. For example, access to the internet and the availability of programs and services were significant barriers for young caregivers and their families in rural communities, similar to the findings of a previous study [10] that compared young caregivers who lived in rural versus urban communities in the Canadian context (pre-pandemic).…”

“…Research on the lived experiences of young caregivers and their families in the Canadian context is growing [1,3,4,6,[9][10][11]; however, the available research does not report on the impact of the COVID-19 pandemic on young caregivers and their families in Canada. Even the study conducted by Newman and others (2022) [10], which collected data on young caregivers during the pandemic living in Ontario, Canada, did not capture the impact of the pandemic on young caregivers.…”

“…Research on the lived experiences of young caregivers and their families in the Canadian context is growing [1,3,4,6,[9][10][11]; however, the available research does not report on the impact of the COVID-19 pandemic on young caregivers and their families in Canada. Even the study conducted by Newman and others (2022) [10], which collected data on young caregivers during the pandemic living in Ontario, Canada, did not capture the impact of the pandemic on young caregivers. The study collected data on young caregivers living in rural versus urban communities in phase 1 of their study (conducted before 2020) and, in phase 2 (conducted in 2020), evaluative data on an emergency planning video that was developed to help young caregivers and their families as the pandemic progressed.…”