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Young caregivers or carers are children, youth and young adults (under age 24) who provide care for a sibling, parent or grandparent. They are often a hidden and at-risk-group of caregivers, helping a family member with a chronic illness, disability (physical or intellectual), mental health, addiction, or socioeconomic factor (single parent family, language barrier, etc.). In order to thrive, they need to be recognized and supported in their work by family, peers, school and professional healthcare providers.
There are over 500,000 young caregivers providing support to their families in Ontario. That’s 17% of Ontario’s 3.3 million caregivers. There is no data for young caregivers under the age of 15 but we know there are kids as young as 5-years-old in a caregiving role.
Young caregivers support their family members in various ways, including by providing personal care (grooming, dressing, medication administration), caring for siblings, providing financial, practical and emotional support. Their care work is often equivalent to a part-time job, with young caregivers providing an average of 14-27 hours of care per week.
Young caregivers often grow up quickly and lose their childhood too early. They can experience feelings of anger, isolation, loneliness and grief — some suffer from depression or anxiety. Caring work can affect how well they do at school and impact other areas of their life, such as socializing and extracurricular activities. This “young carer penalty” can have long-term effects on their development and well-being.
“No one should have to choose between their family and their future.”Young Caregiver
How To Identify a Young Caregiver at Risk
Many young caregivers do not self-identify with this role. Others feel it is necessary to keep this aspect of their lives private to prevent drawing attention to their family situation. This can be out of fear for intervention or out of fear of peers finding out leading to potential bullying.
There are a range of risk factors to look out for including:
- Increased stress
- High levels of anxiety
- Low self-esteem
- Loneliness and isolation
- Difficulty relating to peers
- Depressive symptoms
- Self-harm and thoughts of suicide
Helping Young Caregivers in Schools
Caregiving can result in time away from school to care for a family member in times of crisis or to attend medical appointments. Many young caregivers report being too tired to attend school or that their sleep deprivation results in poor concentration. All of this can lead to poor academic achievement.
That’s why it is very important for schools to raise awareness among staff and students about the issues related to young caregivers. Schools can create a safe environment where a teacher is more observant of student behaviour and can identify a potential young caregiver, and where a young caregiver feels able to ask for help.
Is the student…
- Often late for school
- Missing school
- Consistently tired in class
- Socially withdrawn
- Often sad
- Often anxious
- Unable to concentrate in class
- Having behavioural difficulties
- Missing deadlines for homework or assignments
- Underachieving academically
- Unable to participate in extra-curricular activities
Young caregivers want school staff to be aware of their caregiving role and to receive support from their schools but also wish for it to remain hidden from their peers. Suggestions from young caregivers included homework clubs, mentoring from other students, flexibility, deadline extensions and access to a phone during the day.
“I feel that people don’t understand me or my caregiving responsibilities. When I have a lot to do at home, I am unable to sleep. Because of this, I am unable to focus and think about anything other than what is going on at home. I fall behind in my [school] work and fall behind in my classes. I have failed tests because I am unable to focus.” – Young Caregiver
Information from the Young Caregivers Association.
Support Services for Young Caregivers
There are several services and supports available for young caregivers:
Alzheimer Society of Toronto created the Young Carers Meetup program, a series of in-person and online meetings for young caregivers to discuss self-care, responding in difficult situations, and maintaining relationships with their other family members and friends.
Bounceback is a free skill-building program designed to help adults and youth 15+ manage symptoms of depression and anxiety.
Emily’s House at Philip Aziz Centre is a children’s hospice that extends their support services to young caregivers who are siblings to a child or youth with a life-limiting or terminal illness and healthy children who have a parent or guardian living with a life-limiting or terminal illness.
Family Association for Mental Health Everywhere (FAME) is a registered charity brought together by families with a mission to facilitate the development of resilience for families living with mental illness. The charity provides support, education, coping skills and self-care strategies for families and caregivers.
Gilda’s Club Greater Toronto (GCGT) is a registered charity that provides support, education, and social interaction for cancer patients and their families. The inclusive program adopts a “whole family” approach so that friends and family of all ages can receive the support they need free of charge.
Heart House Hospice provides grief and bereavement support to dying patients and families, including caregivers and children, so that people can receive end-of-life care at home. Their Children and Youth Grief Network and Helping Us Understand Grief programs help young caregivers understand their caregiving role and learn to cope with the emotions of caregiving.
Huntington Society of Canada is a non-profit organization that supports people and families living with Huntington Disease through counselling services and medical research. The Youth Mentorship Program allows young caregivers caring for someone with Huntington Disease to meet a mentor with similar experience.
Kid’s Help Phone is a 24/7 national support service, offering professional counselling, information and referrals, and volunteer-led, text-based support to young people in both English and French.
Tel: 1-800-668-6868 Text: 686868 Live Chat
Roger Neilson House is a pediatric palliative care hospice on the campus of the Children’s Hospital of Eastern Ontario. The Spectacular Incredible Braving Siblings (SIBS) Program supports siblings of children with life-limiting illnesses. Young caregivers learn about self-care and coping strategies for their emotions, as well as information relevant to their sibling’s illness.
The Teresa Group is a community-based charitable organization that provides support to children and families affected by HIV and AIDS. Various support groups and a summer camp program offer young caregivers an opportunity to learn about coping with the stigma of HIV and AIDS and the stresses of their caregiving experience.
The Young Caregivers Association (Powerhouse Project) was created in 2003 as a special project of the Alzheimer Society of the Niagara Region. Since then, its mission has grown to promote the well-being of any young caregivers through social, recreational and educational programs in the Niagara and Haldimand-Norfolk Regions.
The Young Carers Program was developed by Hospice Toronto to meet needs of Young Carers and their families by facilitating supportive programs, with a focus on recreational, social, educational, and skill development activities.
The Young Carers Project was launched in Waterloo Region as a community collaborative working to educate the public about the existence and needs of young caregivers, and has developed resources and programming for young caregivers in the area.