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.
Highlights
Responding to the needs of young carers, our academic team used a collaborative approach and worked with the Young Caregivers Association (YCA; a not-for-profit organization that has supported young carers for over a decade and has become nationally recognized as the leader in young carer advocacy, support, and programming) to support their vision of “a Canada where young caregivers and their families are recognized, supported and empowered to achieve their full potential.” With roots in the Niagara region, they offer services in more rural areas and recently began focusing on developing a national family caregiver strategy with other provincial family caregiving organizations across Canada
Caregiving responsibilities for a young carer is estimated to take up 14 to 27 hours per week, which is equivalent to a part-time job and it is no surprise that their unpaid contributions to caregiving results in an estimated $25,000 to $50,000 CAD in annual savings for the family and healthcare system through their unpaid caregiving (Chalmers, 2012; Stamatopoulos, 2018; YCA, 2020)
This invisibility is the result of a lack of recognition and representation of young carers in key communications, legislation, policies, and plans in Canada related to unpaid caregiving
Summary
Responding to the needs of young carers, our academic team used a collaborative approach and worked with the Young Caregivers Association (YCA; a not-for-profit organization that has supported young carers for over a decade and has become nationally recognized as the leader in young carer advocacy, support, and programming) to support their vision of “a Canada where young caregivers and their families are recognized, supported and empowered to achieve their full potential.” With roots in the Niagara region, they offer services in more rural areas and recently began focusing on developing a national family caregiver strategy with other provincial family caregiving organizations across Canada. Despite the growing number of children and grandchildren who must take on a caregiving role to support a loved one, young carers remain invisible to most Canadians (Burns et al, 2013; Chadi & Stamatopoulos, 2017) This invisibility is the result of a lack of recognition and representation of young carers in key communications, legislation, policies, and plans in Canada related to unpaid caregiving. Federal programs such as the Caregiver Credit and the Compassionate Care Benefit are only intended for working adults, and Canada in general lacks the necessary policies to support young carers in schools and post-secondary institutions (Breen, 2016). Lack of support contributes to stress and depression, low self-esteem, anxiety, loneliness and isolation, difficulty relating to peers, and even suicidal ideation among young carers (Chalmers & Lucyk, 2012; Lakman et al, 2017; Lakman & Chalmers, 2019; Stamatopoulos, 2018)
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