Young Carers

Six young carers share their stories

Picture this: A filmmaking workshop with a group of youth from 10 – 18 years old. Each one was there to make a video about them, and they played the role of writer, editor, videographer, photographer, and everything in between.

You can imagine the instant silliness and fun that explodes when they are given cameras, their own MacBook Pros and access to a temporary recording studio. But this wasn’t a typical group of 10 – 18 year olds. It didn’t take more than a couple of hours to realize this group was wise beyond their years. 

young carers share their stories
It is estimated that 17% of Ontario caregivers are between the ages of 15 and 24.
young carers share their stories
Young carers at a Powerhouse Project activity night in St. Catharines, Ont.

This was a group that helped young carers share their stories. If you are like most people, you’re likely not sure what that means. We were the same—until we started our journey looking at the issues and challenges faced by Ontario’s family caregivers.

Young carers generally refers to young children (sometime just four or five), youth or young adults who support or have other responsibilities helping a family member who has a health issue—like chronic disease, disability, mental health and/or addiction.

Once we learned more about young carers, it wasn’t long before we heard about The Powerhouse Project—a group supporting young carers in the Niagara region and Haldimand and Norfolk counties.

The Powerhouse Project exists to support children and youth, who find themselves in a caregiving role at a young age. The project offers a variety of free services and activities to empower Young

Carers and their families as they navigate the complications of illness and all that entails. Through weekly programming that includes arts and crafts activities, team-building, camps, education workshop, and more, The Powerhouse Project aims to foster resilience, reduce isolation and caregiver fatigue and alleviate stress and anxiety.

As part of our work with caregivers, The Change Foundation is committed to bringing attention to this little-known situation. One of our initiatives included hosting this filmmaking workshop that enabled this group of youth to tell their own stories using video.young carers share their stories

 

As part of our work with caregivers, The Change Foundation is committed to bringing attention to this little-known situation. One of our initiatives included hosting this filmmaking workshop that enabled this group of youth to tell their own stories using video.

The stories are hard to comprehend. They are often heartbreaking, but they are real. It’s an issue we can’t ignore. Young carers are often invisible, but they are in need of support and respect, especially in health care settings.

Each of them embraced the opportunity, even though there were times when it was hard to face the realities and emotions of their lives. In the end, each of them was proud to share their video with the group and their families. It is our honour to share them with you.

To watch the finished videos and to hear young carers share their stories, click here: www.changefoundation.com/ontario-young-carers.

 

 

Q&A: Michelle Lewis, The Powerhouse Project

If our work through The Caring Experience project has shown anything, it’s that no one family caregiver journey is the same. Some journeys can last years, others a matter of months, all with varying intensities. However, one type of caregiving experience that is often invisible is that of young carers – children and young adults providing support or care for a family member.

Michelle Lewis, The Powerhouse Project
Michelle Lewis

That’s where The Powerhouse Project by the Young Carers Initiative comes in. The Powerhouse Project offers support programs to young carers in the Niagara Region, as well as Haldimand and Norfolk counties. We sat down with Michelle Lewis, Executive Director of the Powerhouse Project, to learn more about who young carers are and the impact of this essential and wonderful project.

 
  1. Who are young carers? How might the role of a young carer differ from that of an adult caregiver?

Young carers are children, youth, and young adults who provide care for a family member due to a chronic illness, disability (physical or intellectual), mental health issue, addiction issue, or socioeconomic factor (single parent family, language barrier, etc.).

In addition to a caregiving role, young carers may also experience the emotional impact of a family member needing their support. Young carers may provide personal care, sibling care, financial/practical care, emotional support, complete household chores, and so much more for their relative needing assistance. 

The key differences between young carers and adult caregivers is that having the added caregiving responsibilities within the home has been shown to have negative impacts on young carer identity development, social development, academic achievement and psychological well-being as well as to limit opportunities for pursuing education.

  1. It’s important to remember that young carers are supporting their family in very grown-up ways, but also are trying to experience what it’s like to be a kid. How does the Powerhouse Project help these young people strike some kind of balance?

I think the most important thing we do at Powerhouse Project is validate the caregiving experience for our young carers and help them understand the importance of their role. By reducing the stigma and negativity around the young carer experience, we can then shift the focus onto their own self-care and that there is nothing wrong with taking time for themselves. We actually have a life skills program called Balance where we teach just that — how to balance all the demands of school, friends, family, with caregiving on top of it all. Time management, stress management, effective communication, and being more self-aware are all a part of the lessons of this program. Our weekly respite program, Carers Night Out, gives young carers in various communities time away from home where they can connect socially with their young carer peers and take time to do age-appropriate activities.

  1. The Powerhouse Project serves a fairly large and sometimes rural area of Southern Ontario. What challenges do you face in bringing these programs and services to young carers?

One of the biggest challenges for us is transportation, which is a barrier to service for many of the families we serve. Some of our parents have lost the ability to drive, or don’t own a vehicle, which prevents them from being able to drive their children to programs.

When serving a rural community, the distance between houses can be significant. We do our best to bring programs to the communities where most of our clients reside and use the personal vehicles of staff to provide transportation to those most in need, but our capacity for this is quite limited.

Another challenge for us is identifying young carers. Given that this has been deemed the ‘silent population’ of caregivers, without young carers self-identifying or having someone advocate for them, it is very hard to serve this population. We know there are many more young carers out there. We have worked hard to establish strong referral relationships with key agencies in the communities we serve to assist with identifying young carers. Working with health care professionals is the next desired step for us.

  1. The interactions between young carers and those working in the health care system must be unique. What kinds of things have you seen or heard through your work?

Over the past few years we have been made aware of some of the experiences our young carers have had. For example, one youth had to call 9-1-1 in the middle of the night for his mom and was not allowed to ride in the ambulance, so he was left home, alone. Another youth had to get his mom to the ER knowing she was experiencing anaphylaxis. While in the waiting room, his mom’s condition became critical before he was listened to as he was trying to advocate for his mom as he knew exactly what she needed. One of our young ladies has interpreted for her father at medical appointments for the last 10 years. She has felt respected by the doctors she has interacted with. She has also made suggestions for the design of her father’s prosthetic legs as they cause her pain when she puts them on her father.

However, we are thankful for the opportunity to work with The Change Foundation as this is an area we would like to focus more on.

  1. What’s next for the Powerhouse Project for 2016 (and beyond)?

We are currently creating a strategic plan to map the direction for our organization which will have a large fund development focus. We need to access more funding in order to continue the wonderful path we are on.

There is so much potential and we know there is need for young carer support. To help with this, we will continue to work with Dr. Heather Chalmers in the Department of Child and Youth Studies at Brock University to ensure our services are evidence-based.

For more information on The Powerhouse Project, please visit their website: www.powerhouseproject.ca.

WHAT’S BEING SAID

Created in partnership with our #ChaningCARE teams, register to complete this 3-part eLearning module to learn through tips and examples how as healthcare providers you can help improve the experience of family caregivers. bit.ly/2U1Mlcs pic.twitter.com/lKzWKDPM4A