young carer

Young carers in Canada, a spotlight on research

The opinions expressed in this blog post are those of the author and do not necessarily reflect those of The Change Foundation.

VS_Headshot
               @DrVivianS

Vivian Stamatopoulos, Ph.D., Young Carer Researcher

In May, CBC’s The National aired Caring for Tor, a short documentary about young adult carer Stephane Alexis. Stephane, a 24-year-old from Ottawa, has put his educational and career goals on hold to help care for his brother Torence (Tor), who has cerebral palsy. 

Stephane is not alone.

My 2012 research showed that over 1.25 million Canadian youth between the ages of 15 to 24 provided unpaid caregiving, in the context of aging and/or long-term illness or disability[i]. Importantly, these statistics omit children and youth under the age of 15 years, putting the actual number of Canadian young carers somewhere in the ballpark of 2 million. Although it appears that Canada has one of the largest global young carer cohorts, the issue remains relatively unheard of across Canada.

To be clear, these children and youth are not just casually helping out. In fact, the majority of young carers involved in my research provide roughly 30 hours of unpaid care per week. They juggle the equivalent of a full-time job alongside their full-time studies. The most troubling of my findings, however, relates to what I call the “young carer penalty”[ii] incurred by those providing ongoing and substantial care. Building off the established “care penalty”[iii] experienced by adult women who have historically provided the lion share of unpaid caring labour, I show how substantial child and youth-based caregiving constitutes a form of hidden labour that carries with it a range of pecuniary and non-pecuniary costs. These costs include (but are not limited to) decreased educational performance, compromised employment and extracurricular opportunities, increased social isolation, fractured peer relationships, sleeplessness, anxiety and self-harm[iv]. What’s worse, these young people often deal with this care burden in isolation given the limited number of young carer programs across Canada[v].

In other parts of the world, young carers are factored into national policies and have access to a comprehensive range of caregiver supports. In the United Kingdom, young carers have legal rights as caregivers and are provided with a choice of a direct monetary payments or access to over 350 dedicated young carer programs[vi]. In Australia, similar services exist in addition to a national young carer bursary program for those studying at the secondary school level or above[vii], prompted by evidence showing that Australian young carers are more likely to be NEET (neither in education, employment or in training) than their non-caregiving peers.[viii]

While we have a long way to go to catch up to other countries currently supporting young carers, there has been a recent and growing movement across Ontario to bring light to the cause. In November 2017, The Change Foundation brought together over 20 young carers and over 60 professionals, policy makers and researchers for an inaugural Young Carers Forum. Here, the goal was to highlight the issues faced by young carers and discuss how to better support their unique caregiving needs. Recently, I have also been called upon to share my research with ministry officials and community organizations across Ontario, who are recognizing that an increasing number of young carers utilize their services. While these developments are positive, they must remind us that on the precipice of change, we stand to take the growing provincial interest in young carers and turn that into a national framework addressing the needs of such young people across Canada.

About the researcher: Dr. Vivian Stamatopoulos is a professor in the Faculty of Social Sciences and Humanities at University of Ontario Institute of Technology (UOIT). Her research focuses on child and youth-based caregiving (i.e., young carers). For more information, Vivian can be reached at vivian.stamatopoulos@uoit.ca.

References:

[i] Stamatopoulos, V. (Forthcoming). Supporting or separate domains? Parentification and young carers in Canada. In L.M Hooper (Ed.), Parentification: racial, ethnic, cultural, and contextual influences on culturally tailored assessment and treatment (pp. XX–XX). New York, NY: Springer-Science.

[ii] Stamatopoulos, V. (2018). The Young Carer Penalty: Exploring the costs of caregiving among a sample of Canadian youth. Child & Youth Services. doi.10.1080/0145935X.2018.1491303

[iii] England, P., & Folbre, N. (1999). The cost of caring. The Annals of the American Academy of Political and Social Science, 561, 39–51. doi:10.1177/000271629956100103

[iv] Stamatopoulos, V. (2018). The Young Carer Penalty: Exploring the costs of caregiving among a sample of Canadian youth. Child & Youth Services. doi.10.1080/0145935X.2018.1491303

[v] Stamatopoulos, V. (2015). Supporting Young Carers: A Qualitative Review of Young Carer Services in Canada. International Journal of Youth and Adolescence, 21(2), 178-194.

[vi] Ibid.

[vii] http://youngcarers.net.au/young-carer-bursary-program/

[viii] Cass, B., Smith, C., Hill, T., Blaxland, M., & Hamilton, M. (2009). Young carers in Australia: Understanding the advantages and disadvantages of their care giving. FaHCSIA Social Policy Research Paper #38. Canberra: Department of Families, Housing, Community Services and Indigenous Affairs.

Ontario’s first Young Carers Forum

In November 2017, The Change Foundation hosted Ontario’s first Young Carers Forum – bringing together 20 young carers and over 60 professionals, policy makers and researchers to talk about priority actions needed to support young carers in the important role they play in health care, in society and at home.

Throughout the day young carers were asked to share their experiences, journeys, and stories, so that we can all work together to drive meaningful change. For many of the young carers, the forum was the first time they had ever interacted with other young carers, the first time they were asked about their experience, and the first time they felt like the experiences they were sharing could make a difference.

Through the discussions, the following five priority areas for action were identified and voted on by all participants:

  • Increase awareness and understanding of young carers.
  • Work on better ways to identify young carers and link to the education system
  • Build an alliance of young carers organizations
  • Work with the Ontario government to ensure that young carers are included from the outset of the new caregiver organization
  • Influence an inter-ministerial and inter-governmental collaboration to support young carers

Working in partnership with caregivers and health care providers, our goal at The Foundation is to fundamentally change the way the health care system interacts with caregivers, and shine light on the vital but often unrecognized role of family caregivers, including young carers.

Young Carers Forum

Videos:

Voices of Ontario’s Young Carers

Highlights from Ontario’s First Young Carers Forum

Abbigail’s Story

Ontario young carer Liam answers –
Why is raising awareness about young carers important?

Ontario young carers Amy & David answer –
What do you want other young carers to know?

Ontario young carer Stephane answers –
What advice do you have for other young carers?

Ontario young carer Alissa answers –
How do you cope with being a young carer?

Media Stories:

  • Metro Morning (Emily’s young carer story)
  • Metro Morning (The Foundation’s Christa Haanstra speak to CBC’s Metro Morning about Young Carers and The Foundation’s role)
  • CBC.ca/Up North (Alissa’s young carer Story)

Inventory:

What are the impacts of being a caregiver on a young person?

Pic of Fitsum Areguy
                             @fitsumareguy

The opinions expressed in this blog post are those of the author and do not necessarily reflect those of The Change Foundation.

Fitsum Areguy, young carer 

When I talk about the impacts of being a young carer, my lived experience sheds light on how complex it is.

I was 10 years old when I became aware of how different my home life was from my peers’. My parents were refugees who fled war in Ethiopia and Eritrea, and they struggled to adjust to life in Canada. Taking care of my family was not a conscious choice at first, it was just the way things were. I got so used to doing things for my parents that it became baked into my identity.

One memory of caring for my parents that I look fondly back at now was when I was in the sixth grade. My father was attending night school to get his GED, and his English classes were difficult. He came home after class one night and slapped a book and papers onto the kitchen table. “Please my son.” He speaks English mixed with Tigrinya when he’s frustrated. “Aytered’anin (I don’t understand). Read this and tell me what is this.”

The book was Hemingway’s The Old Man and the Sea, along with instructions from his instructor for a 2500-word essay. There was no other choice – I was compelled to help him. I enjoyed the reading, and he got a B+ on that paper.

This was the norm for me – translating for my parents, answering phone calls, writing letters, et cetera. All this extra work came at a cost though. At school, I was exhausted from having spent many nights staying up to help my parents with various things. I dozed off in class which got me in a bit of trouble, but I never explained why I was so tired. I didn’t want anyone to know that I was different; I just wanted to fit in. As far as I knew I was the only one among my mostly homogenous, upper-middle-class classmates who had to do these things for their parents.

As I had already accepted the role of a support person in my family, when my mother was diagnosed with a brain tumor it altered my life course. I was in my first year of university when she received the diagnosis, and my caring responsibilities and coping efforts grew to a point that I could not sustain my studies and also be there for her. I eventually dropped out.

I got through this tough time with support from The Young Carers Project of Waterloo region. Their participatory action research project on young carers’ experiences produced some helpful tips on how to support young carers, which you can check out here. They asked the right questions and supported me in the way that I needed to be supported.

Looking back on my life shows me how positive and negative young carer outcomes can be two sides of the same coin. Sometimes, being a young carer can be lonely and isolating, and at other times it can be a life-giving and affirming experience. Despite the hard times, I was proud of what I could do for my family, and I attribute my greatest strengths to my experience as a young carer.

 

How is a young carer’s role different than the role of an adult caregiver?

One of the main differences is that it is socially accepted for adults to care for others; as a result, young carers are often overlooked and are far more hidden than their adult counterparts.[1] [2]

There are times when the young carer role blurs parental lines, and there is sometimes a lot of shame and guilt within families who have a young person caring for other members, further masking young carers in the home.[3] [4] In addition, young carers have developmental stages and milestones that can be interrupted, sped up, and/or missed as a result of their caregiving.[5] Dedicating time and energy to caring for family members, especially at a younger age, can mean time away from just growing up and forming an identity and agency that isn’t bound to another person.[6]

 

How do we build awareness and understanding of young carers?

 I agree with three things that Vivian Stamatopoulos[7] identified as vital for the young carer movement in Canada: (1) targeted young carer legislation, (2) greater public awareness of their existence, and (3) more dedicated young carer programs.

These three things are interrelated and impact one another, but the greatest awareness begins with legislation.

Social policy at the provincial and/or federal level that focuses on young carers would be a game-changing development. Our friends across the pond have The Children and Families Act and Care Act, and it opened up a whole world of support and awareness of young carers in the UK.

There are only a handful of programs and groups in Canada that are directly working with, or are focused on mobilizing supports for, young carers. Groups such as the Powerhouse Project – Young Carers Initiative, the Young Carers Program, and the Young Carers Project have been doing this work in Ontario for a long time (see this inventory for a complete list). These groups are trailblazers in our province, and we need to highlight the work they do so that other groups can follow their lead.

 

Change is needed. Where do we start?

As we heard in the tweetchat (click to view Storify of tweetchat) some good places to start are within schools, healthcare and social services. Integrating supports and fostering partnerships within and across these systems will be crucial for creating lasting change.

To this end, last year The Change Foundation brought many stakeholders together at their Young Carer forum, and a lot of connections were made. I’d like to see more collaborations between young carers, researchers, policy makers, education and health care providers.

I get really excited when I think about the potential for interdisciplinary efforts that use technology to create accessible and user-friendly projects. Phone based-apps, video games, art installations across various mediums – these are approaches that are modern, creative and unique that have the potential to meaningfully engage young carers, their families and the wider public.

Ideally, future progress will be driven by young carers who self-identify and self-advocate. This is much more likely to happen when there are more effective allies in communities who can empower and uplift young carers to use their voices and create change.

 

Fitsum Areguy is a young carer who was heavily involved in The Change Foundation’s 2017 Young Carers Forum – the first event of its kind in Ontario – and who co-moderated The Change Foundation’s Young Carer Awareness Day tweetchat in 2018. Fitsum is a graduate of the Recreation and Leisure Studies program (Specialization in Therapeutic Recreation) at the University of Waterloo. He is one of ten recipients of the Ontario Medal for Young Volunteers in 2016 for his work with the Young Carers Project. 

 

SOURCES

Ali, Lilas, Brit Hedman Ahlström, Barbro Krevers, Nils Sjöström, Ingela Skärsäter (2013), “Support for Young Informal Carers of Persons with Mental Illness: A Mixed-Method Study,” Issues in Mental Health Nursing.

Banks, Pauline, Nicola Cogan, Sheila Riddell, Susan Deeley, Malcolm Hill & Kay Tisdall (2002), “Does the covert nature of caring prohibit the development of effective services for young carers?”, British Journal of Guidance & Counselling.

Charles, Grant, and Tim Stainton and Sheila Marshall (2012), Young Carers in Canada: The Hidden Costs and Benefits of Young Caregiving, The Vanier Institute of the Family.

Hamilton, Myra Giselle and Elizabeth Adamson (2013), “Bounded agency in young carers’ Lifecourse-stage domains and transitions”, Journal of Youth Studies.

 Moore, Tim, and Morag McArthur (2007), “We’re all in it together: Supporting young carers and their families in Australia,” Health & social care in the community.

Stamatopoulos, Vivian (2015a), “Supporting young carers: A qualitative review of young carer services in Canada,” International Journal of Adolescence and Youth.

 NOTES

[1] Ali et al. (2013).

[2] Banks et al. (2002).

[3] Moore & McArthur (2007).

[4] Smyth, Blaxland and Cass (2011).

[5] Charles et al. (2012).

[6] Hamilton & Adamson (2013).

[7] Stamatopolous (2015a).

Raising awareness for young carers in Ontario

Catherine Monk-Saigal, Program and Communications Associate

When we hosted Ontario’s first ever young carers forum in late November, 2017, we shined a long overdue spotlight on Ontario’s young carers. We asked the young carers present—a group that is too often overlooked— to share their experiences, journeys, and stories, so that we can all work together to drive meaningful change. For many of them, the forum was the first time they had ever interacted with other young carers, the first time they were asked about their experience, and the first time they felt like the experiences they were sharing could make a difference.

We asked them what action was needed around awareness, identification of young carers, advocacy, and cultural considerations. And what do we need to do to make change happen?

Throughout the day, the most pressing issue became clear: there is a profound and universal lack of understanding and awareness around the role of young carers.

And this lack of understanding is not system agnostic. Young carers experience it throughout the healthcare and education systems. Often, this lack of understanding and awareness translates into stigma and fear. 

What’s surprising about this? And how do we tackle it?

There are very few of us who will never wear the caregiver hat. However, for young carers, this hat is worn at a much earlier age than most.

There is an underlying fear among many young carers about the stigma and misunderstanding of their role. The young carers at the Forum said that often, friends and schoolmates have a hard time understanding that their caregiving role is not a choice–that they have a duty and a responsibility that many of their peers simply cannot understand or relate to. This is largely due to this lack of understanding.

To combat the issue of awareness, one suggestion from the Young Carers Forum was that we celebrate Young Carers Awareness Day on January 25, 2018, like they do in the UK. So that’s exactly what we are doing: a simple social media blitz that we hope will contribute to the growing awareness throughout the province.

We hope we won’t be alone in this. We want you to join the conversation we’re helping to spark online.  

Follow #YCAD on Twitter throughout the month and join the conversation on January 25th at 4 p.m., as we host a tweetchat on young carer awareness co-moderated by Fitsum Areguy, an Ontario Young Carer (see below for more information on the tweetchat).

As we work through our “next steps” as an organization, it is very clear just how valuable and meaningful the act of coming together with a common experience was for these incredible young people. We just need to listen to and read the comments from young carers to realize how important this is.

One young carer said: “This was life-changing. I’ve never talked about my experience before. It’s always about my sister.” Another stated: “I feel like I have made a big influence on the future of young carers and no longer feel alone in my situation.”

We’ve often tweeted and blogged about the lack of supports available to Ontario’s young carers. We are now moving forward with the first step to increase awareness and understanding in the hopes that this will lead to better and more widely accessible supports.

 YCAD tweetchat info

About the tweetchat:

We’re pleased to be hosting our first-ever tweetchat at 4 p.m. EST on Thursday, January 25, 2018—Young Carer Awareness Day.

Here are the questions we’ll be asking:

  1. What are the impacts of being a caregiver on a young person?
  2. How is a young carer’s role different than the role of an adult caregiver?
  3. How do we build awareness and understanding of young carers?
  4. Change is needed. Where do we start?

The tweetchat will be co-moderated by young carer Fitsum Areguy and Christa Haanstra, The Change Foundation’s Executive Lead, Young Carers.

Follow #YCAD, as well as @TheChangeFdn, @fitsumareguy and @C_Hanstra to participate. 

Click to download our Young Carers Awareness Day toolkit 

Click to view full Storify of YCAD tweetchat

Ontario’s Young Carers Awareness Day

Join us on Twitter on January 25th, 2018 to raise awareness of Ontario’s young carers.

Young Carers Awareness Day is celebrated in the UK. For the first time, we are also recognizing this awareness day in Ontario. Join us on Twitter (@TheChangeFdn) using #YCAD to join the conversation. We invite young carers, young adult carers, organizations that support young carers, and anyone that is interested in seeing change in Ontario for young carers, to help create an online blitz that will create awareness and understanding of young carers in Ontario.

Ways to get involved:

  • The Ontario Caregiver Coalition and the Young Carers Initiative – Powerhouse Project are leading the way on a declaration of January 25th at Young Carers Awareness Day. Share their announcement, or better yet, declare the day yourself to your audience. #YCAD social media icons have been created for everyone to use.
  • The Change Foundation and others will be sharing many stats and other information about young carers to bring the topic to the forefront for policy makers, influencers, elected officials and others. Re-tweet this content, or create your own to add to the online blitz.
  • Join the one-hour tweetchat live at 4 pm to talk about young carers. Check out our latest blog post to learn more.

We hope you’ll join us to make the first-ever Young Carers Awareness Day in Ontario a big success.

 

YCAD Icon
Click to download Young Carers Awareness Day toolkit

 

 

WHAT’S BEING SAID

How do Ontario’s caregivers spend their #caregiving time? Find out in our latest report, Spotlight on Caregivers in Ontario – the first report of its kind in our province: bit.ly/2zRU6Jf #onhealth pic.twitter.com/OySgS1WRrV