By Dr. Yona Lunsky, Clinician-Scientist in Adult Neurodevelopmental Services
According to the Ontario Change Foundation, who hosted their first Young Carers Forum in November, “there is a profound and universal lack of understanding and awareness around the role of young carers.”
To combat the issue of awareness, one suggestion from the forum was to celebrate Young Carers Awareness Day on January 25, 2018, similar to how this is done in the UK. Organizations such as ours, who offer mental health services and can interact with young carers through our efforts, were invited to be part of this awareness building.
But what is a young carer?
I don’t think I had ever heard the term ‘young carers’ in my 25 years of working in the field of mental health until this past year. And when I did hear about it, I assumed it referred to that young adult in university, looking after their parent with early onset dementia, or that school age child supporting a parent with depression, an addiction or schizophrenia. At CAMH, we provide services to youth and young adults in each of these scenarios, acting as primary caregivers for someone who used to care for them, and struggling perhaps because they do not have a group to connect with, in a similar situation, and because their day-to-day demands cannot be accommodated by their added caregiving responsibilities.
But as I read further on this topic and heard from young carers about their experiences, I was reminded about another young carer group, who can be completely invisible to us. These are the brothers and sisters of young people with different types of health issues or disabilities. I didn’t think of them as young carers because they don’t have the primary caregiving responsibility. But the Change Foundation’s efforts, and a piece published this fall in the Globe & Mail has helped me to see that indeed these brothers and sisters are young carers too. And there is so much we can offer that can impact them, as well as their entire families. I know this to be true because I was a young carer myself, although I did not know it.
Growing up, I spent a lot of time in clinical settings with my sister. In the waiting room, in the cafeteria, wandering the hallways during appointments. Back then, we had no smartphones or iPads. There weren’t even TV’s with kids programming in the waiting room. It was just part of life. Imagine if at the same time that my sister was receiving services, I could participate in something too! It could be social or recreational, like Sibshops, a movement started in the U.S. by Don Meyer, or it could be some time with a social worker or counsellor, checking in with me to see how I was handling life, because of my sister’s challenges or just because how I was handling life was worth talking about. Imagine if when I was at school, someone on the guidance team knew about the added responsibilities I had, or the different and sometimes isolating situation I was part of: the teasing, the embarrassment and the frustration. I could talk to them if I needed to, I could read things about what other brothers and sisters feel or do in my situation. And then think about what it would mean if as I was becoming an older teenager and a young adult, I was invited to be part of (if I wanted to) some of the clinical conversations, sharing my perspective, and hearing what clinicians were thinking about our current situation. Brothers and sisters see the world differently sometimes than their parents. And that is an important perspective to capture. Not being included in this transition age means that siblings don’t develop the skills and comfort needed when they become involved later, if they become involved.
So on our first Young Carers Awareness Day here in Ontario (#YCAD), I invite clinicians to consider: What does your service offer to brothers and sisters? How can you help them feel like their experience matters and give them the supports they need? And I encourage all of us to build awareness of and reach out to the young carers amongst our families and friends, to let them know that they are valued and to celebrate their contributions.