When Kai Bighorn was in high school, he spent more time counting pills for his dad than doing “normal teenage things.”
Bighorn’s toil as a teenage caregiver started gradually, but ended up a full-time responsibility as his father’s heart failure led to complications such as severe diabetes, visual impairments and a life-threatening infection.
“It was emotionally and physically draining,” says Bighorn, now 28, who quit part-time jobs to become his father’s primary caregiver. “I feel incredibly lucky to have been so close to my dad before he passed—but I also feel like I missed out on part of my youth,” says Bighorn, whose caregiving increased when a homecare program fell through.
Bighorn’s experience is typical of a young caregiver, says Prof. Grant Charles, UBC School of Social Work. This is a largely invisible group of young Canadians who, for a variety of reasons, end up providing significant caregiving support to their families – both unpaid and outside the healthcare system.
“For the most part, these kids are slipping under the radar,” says Charles. “They play this crucial role in society, but we are not recognizing their work, or supporting them adequately. It is important that we help to reduce the negative outcomes of these situations, while increasing the positives for the young person and their families.”
Charles recently led the first study on young caregivers in Canada (aged 12-17), which included a survey of students in a Vancouver high school. The research team, which included Tim Stainton and Sheila Marshall, found that a surprisingly large proportion of students—12 per cent —identified themselves as significant family caregivers.
The study also included interviews with 50 former young caregivers, many of whom reported positive aspects of the experience, including stronger family ties and a sense of pride and accomplishment. However, there were also many potential negative outcomes: isolation, stress, depression, and adverse social, educational and employment impacts. According to Charles, negatives outcomes are most likely with youth caring for family members with severe mental or physical conditions over prolonged periods.
Published by the Vanier Institute of the Family, the study is an important first step in determining the size and nature of the issue in Canada. The next step is an adolescent health survey in 2013 that will ask all B.C. high school students young caregiver questions, thanks to Charles’ efforts. Whatever the eventual figure is, he says the issue is bigger than most people think. Australia, for example, calculates young caregivers’ value to its health care system at a whopping $18 billion annually, he says.
Charles says greater awareness and support for young caregivers—areas where Canada lags far behind other nations – can dramatically reduce the likelihood of potential negative outcomes. “We need to do a much better job recognizing the issue—from government and schools to the health care system,” he says. “We can help to reduce the incredible stress and isolation that young caregivers face by acknowledging the important role they are playing helping their family navigate the gaps in our healthcare system.”
Charles points to the United Kingdom, which offers a national program for young caregivers, including training, counseling and social opportunities. In contrast, only a handful of grassroots programs exist in Canada, including one in Niagara Falls, Ont. and another in Duncan, B.C., where Charles and Bighorn serve as advisors.
“It blew my mind when I learned there were other young caregivers in my community—I really thought I was the only one,” says Bighorn, who helped to create a series of online resources for the Cowichan Family Caregivers Support Society, including a documentary that he has presented to government, schools and the local community. “Just getting to enjoy a meal together and listen to other people’s experiences really helped me,” he says.
“The time I spent caring for my father, I will cherish forever,” says Bighorn, who put off university to care for his father. “But it was also a big job. Looking back, I really wish I had access to advice from people who knew what I was going through. So that’s what I am trying to do now. I want to raise awareness to help other young caregivers out there.”