More than 1 million young people in Canada aged 15 to 24 provide unpaid care for family members with long-term illness, disability, or health problems related to aging.1 Caregiving tasks can range from basic household chores to more complex medical responsibilities, with many young carers dedicating more than 20 hours per week to this role.2-4 However, the growing number of young carers remains largely invisible in society, particularly within educational institutions and health care systems. While formal support programs for young carers exist, they are limited in their reach.5 Furthermore, most family doctors may not have received training on supporting this vulnerable group and may not be aware of existing resources. The situation in Canada contrasts sharply with that in countries like the United Kingdom (UK), where young carers have access to more comprehensive legal protections through the Care Act and support services.6-8 This case study highlights some of the challenges experienced by young carers in Canada and the potential benefits of early intervention.
Case
Sarah, a 17-year-old senior high school student, has been providing care for her mother, who has been living with multiple sclerosis for 10 years and recently developed substantial motor disturbances, including ataxia and imbalance. Sarah’s caregiving duties include preparing meals, house cleaning, laundry, assisting her mother to get dressed at times, and coordinating her mother’s medical appointments. Sarah has been spending an average of 18 hours per week providing caregiving tasks.
Over time, the strain of balancing caregiving with her schoolwork, in addition to the emotional toll of watching her mother lose autonomy, has taken a toll on Sarah. She confided to her close friend that she has been feeling persistently fatigued, experiencing frequent headaches, and struggling with feelings of anxiety about the future. Her academic performance has suffered and Sarah made a difficult decision to limit her involvement in extracurricular activities to attend to her mother’s increasing care needs.
During a guidance counsellor check-in, Sarah revealed her exhausting caregiving duties. While finding fulfillment and connection in caring for her mother, she has struggled with anxiety, isolation, and guilt about wanting personal time. Although her counsellor recommended seeking help from her family physician, Sarah hesitated due to the long transit time and guilt about leaving her mother.
At the appointment, Sarah’s family physician listened to Sarah describe her experience caring for her mother. With permission, the family doctor arranged to meet with Sarah and her mother together, providing a space to openly discuss and realize their unique experiences related to living with and caring for a loved one with advanced serious illness. At the next appointment, naming and acknowledging the practical and emotional stressors was therapeutic for both of them and created bandwidth for them to begin addressing practical steps to better meet both of their needs.
Sarah’s mother agreed for the first time to accept assistance from a personal support worker. Realizing a large component of Sarah’s anxiety was related to prognosis, her family physician was able to bridge this educational gap with a discussion about illness trajectory. Sarah’s family physician referred her to a community support program offering peer support and skill-building workshops. Sarah began to appreciate the valuable life skills she had developed, including patience, empathy, and tolerance for uncertainty, which enhanced her sense of resiliency. Regular check-ins with her guidance counsellor and family physician provided Sarah with the necessary support to continue providing care for her mother without sacrificing her own well-being.
Discussion
Sarah’s experience is not unique. A growing number of Canadian youth are taking on caregiving roles owing to the aging population and the increasing demands placed on family caregivers by a Canadian health care system in crisis. Like many Canadians, access to community-based primary care is a major gap that Sarah experienced.9 In Canada, the number of youth aged 15 to 24 providing unpaid care increased by 13.5% between 1996 and 2006, and this trend is expected to continue as the population ages.1 Despite the growing number of young carers, support for this population remains limited. In contrast, countries like the UK have introduced substantial legal protections and support services for young carers. Under the UK’s Care Act8 and the Children and Families Act (2014),10 young carers are formally recognized as carers and are entitled to a range of services, including financial assistance and respite care.10 Without proper identification and support, young carers like Sarah are at high risk of experiencing disruptive sleep, burnout, mental health problems, and poor academic outcomes.11,12 With respect to multiple sclerosis, there are data to suggest young carers have felt silent, invisible, and unacknowledged, as they were never asked about the nature and consequences of their caregiving activities.13 Studies have shown that caregiving responsibilities can interfere with child and adolescent development, leading to social isolation, depression, and anxiety.14
As there is a lack of formal recognition of young carers, physicians and other health care providers play a crucial role in identifying young carers, acknowledging their work and connecting them with available support services. Research indicates that asking specific questions about caregiving tasks, such as “Are you assisting a family member or friend with making meals, bathing, getting dressed, or other daily activities?” is more effective at identifying caregivers than general questions about providing care.15 This approach recognizes that many individuals, especially youth, may not identify themselves as caregivers but rather as children, siblings, or grandchildren fulfilling family duties until the role becomes overwhelming. To better support young carers like Sarah, health care providers can also access foundational course work to increase their competencies in caring for caregivers.16 Research has demonstrated that these educational programs substantially improve health care providers’ ability to identify and support caregivers.17
Young carers have unmet needs, from understanding prognosis to requiring care guidance, as most lack formal training.18 Family physicians can use their relational and communication competencies to provide a safe space for young carers to engage in these difficult-to-discuss topics.19 Once identified, young carers can receive guidance or referrals to local support programs, which improve mental health, academic skills, and well-being.18 When local resources are unavailable, online platforms offer virtual communities and workshops to build resilience and coping strategies.20
System-level steps can also be taken to better meet the needs of young carers, as there is limited knowledge regarding the lived experiences of young carers. Future work should aim to develop systems that enable health care providers to collect data about the well-being of young carers, and track this over time to better inform policies and support programs. Additionally, educational institutions should implement individualized approaches for young carers to help them balance their caregiving responsibilities with their academic goals.21 The collaborative approach demonstrated by Sarah’s guidance counsellor and family physician in this case represents an excellent example of cross-sector partnership that should be acknowledged and replicated to better support young carers.
Conclusion
Young carers represent an essential but often invisible part of Canada’s caregiving system. Without adequate support, these young people are at risk of experiencing social, academic, and mental health difficulties, negatively impacting their and likely their loved one’s quality of life. Family physicians and their teams are uniquely positioned to identify young carers, recognize their contributions, and work collaboratively with specialists and educators to offer direct support and connection with available support services. Such carer-centred care can optimize outcomes for both young caregivers and those they support.
Notes
Editor’s key points
▸ In Canada, young carers, defined as individuals aged 15 to 24 providing unpaid care to family members with chronic illness, disability, or cognitive impairment, represent a growing and underrecognized population. This case highlights the challenges many young carers experience in Canada and considers opportunities for family doctors to support these individuals.
▸ Young carers represent an essential but often invisible part of Canada’s caregiving system. Without adequate support, these young people are at risk of experiencing social, academic, and mental health difficulties, negatively impacting their and likely their loved one’s quality of life.
▸ Family physicians and their teams are uniquely positioned to identify young carers, recognize their contributions, and work collaboratively with specialists and educators to offer direct support and connection with available support services. Such carer-centred care can optimize outcomes for both young carers and those they support.
Points de repère du rédacteur
▸ Au Canada, les jeunes proches aidants, c’est-à-dire les personnes de 15 à 24 ans qui offrent gratuitement des soins à des membres de leur famille atteints de maladies chroniques, d’incapacités ou de déficiences cognitives, représentent une population grandissante et peu reconnue. Ce cas met en évidence les défis auxquels font face de nombreux jeunes proches aidants au Canada et examine les possibilités qu’ont les médecins de famille de venir en aide à ces personnes.
▸ Les jeunes proches aidants forment une composante essentielle, mais souvent invisible, du système canadien des soins de santé. Sans un soutien suffisant, ces jeunes personnes risquent d’éprouver des difficultés sociales, dans leurs études et de santé mentale, ce qui pourrait avoir des répercussions négatives sur leur qualité de vie et probablement sur celle de leurs proches.
▸ Les médecins de famille et leurs équipes sont bien placés pour identifier les jeunes proches aidants, reconnaître leurs contributions, et travailler en collaboration avec des spécialistes et des éducateurs pour offrir un soutien direct et établir des liens avec les services de soutien disponibles. De tels soins centrés sur le patient peuvent optimiser les résultats, tant pour les jeunes proches aidants que pour les personnes dont ils s’occupent.
Footnotes
Competing interests
None declared
This article has been peer reviewed.
Cet article a fait l’objet d’une révision par des pairs.
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