Shedding light on young caregivers

10 May 2022

Shedding light on young caregivers

Anne-Sophie Côté is a social worker at Deuil-Jeunesse.

Mettre la lumière sur les jeunes proches aidants

While searching on the Deuil-Jeunesse website, I came across your master’s thesis in social work at Université Laval: Nous sommes de jeunes aidants et nous existons (We are young caregivers, and we exist). Why did you choose this theme and this organization?

I completed my bachelor’s degree in social work in 2016. I went straight into my master’s degree without a specific goal, just out of curiosity. I’ve always been interested in people under the radar! Ultimately, my focus turned to young caregivers. I knew that some young people were fulfilling this role, and I wanted this fact to be known. It was through the university that I became involved with the Deuil-Jeunesse organization so that I could carry out my intervention project, which was to create a support group for young caregivers. I liked this organization so much that once I finished my studies, we decided to continue working together. Today, I am a full-time counsellor.

What have you observed among the young caregivers you have met?

The young caregiver supports someone who is ill or has a disability. I knew that among the caregivers there were children, teenagers and young adults … let’s say 7 to 18 years old. Why weren’t we hearing about them? I was touched by this lack of information. I felt that they should be brought out of hiding.

In 2016, when I began my research, I found very little data on young caregivers existed, and it was from the United Kingdom and Australia. In Québec, there wasn’t much data available. Now there is more!

Where does the notion of bereavement fit into your interventions?

Initially, I created a support group made up of young caregivers who are grieving and caregivers of a grieving parent. Deuil-Jeunesse is a charitable organization that works with young people who are experiencing grief and different forms of loss. It may be the departure of a loved one, a parental separation, or even abandonment. So it’s not just about the death of someone you are caring for. If Dad has died and I live alone with my mother who is depressed and off work, I get up at night to see if she is still sleeping and if she is okay. In this case, I can be considered as a caregiver.

How do young people who look after someone perceive their role? How do the words “caregiver,” “family caregiver,” or “natural caregiver” resonate with them?

So far, no one has come to my office as a “caregiver.” Young people don’t recognize themselves as such. I try to work on this aspect with them, to make them aware of their role by verbalizing their real situation. They take care of someone close to them out of kindness and love. For them, it’s perfectly normal to do so.

In a new episode of our Caregiver Podcast, actress Debbie Lynch-White recalls, “I wasn’t really talking about what I was going through. I don’t think I was capable of going out and getting help. I was young, it was a blur to me, all of it.” Is this role of caregiver “fuzzy” when we are young?

Yes, it’s often done by instinct. Some people see it as an unnatural role for a young person. When you’re the only person who can fulfill it, when it’s an obligation, it may become more stressful and more difficult. Young people don’t talk about it too much, sometimes to protect the image of the person they are helping. They don’t want the person who is ill or affected to be defined only by their illness or condition. It’s often vague, in fact, it’s done “just like that.” It is by listening to other young people talk about their situation that young caregivers understand their responsibilities, their limitations and their differences.

Debbie Lynch-White says, “I was not capable of seeking help.” What about this aspect? When young caregivers want help, do they get enough help, and is that help actually enough?

It is possible for them to get help, but they don’t always know they need it. We gravitate towards these young people. It’s our role as adults to inform them. I’m thinking of health and social services professionals, but also of the school. The school administration must understand them, and encourage them to take care of themselves and to ask for help.

How do young people perceive grief?

In our organization, the term grief is reserved for people who have lost someone they care for. In other cases, it is called “loss.” Understanding that they are not alone, that their experiences and reactions are quite normal, is reassuring to young people. As Debbie Lynch-White mentioned, things are unclear at their age. They have a lot of questions about whether their reactions are normal, how long it will last, what the long-term impacts will be. They need to feel that their reactions are normal.

How is it going in the support groups?

In my intervention project, I was only able to recruit four young people. Even today, it is difficult to recruit for this support group, because the young people do not recognize themselves as such, the word “caregiver” does not mean anything to them. The groups are there, they are open, but there is no enrolment. Individual interventions are more frequent.

What are some strategies for taking care of yourself as a young caregiver?

In our interventions, we encourage young people to use family members to replace them from time to time. We show them how to call on other resources in order to set aside time for themselves, to have time to socialize with friends, as children and young people do. We also give them tips on how to express their emotions, to express what they are feeling. The young people we meet don’t want to stop taking care of their family member, it’s part of who they are, it’s important to them. So it’s a matter of finding a balance between the normal life of a young person and the responsibilities of a caregiver.

We were talking about things being a blur. As a result of your interventions with young caregivers, do you feel that they have more “clarity”?

When we tell them that they are caregivers, we notice a visible sense of relaxation and relief. You can even feel it physically. Hearing that it’s normal to find it difficult at times reassures them. This education and awareness work is often very helpful; it facilitates their role as caregivers.

If Anne-Sophie were to start her master’s degree today, what would change in her approach to the topic of caregivers among youth?

My intervention objectives were out of proportion! I wanted to be part of the solutions. Today, my goal would not go beyond raising awareness and educating people about caregiving. So, less focus on solutions, more on raising awareness…

What can be said in conclusion?

Society needs to talk about these young people; we all need to recognize their importance. Schools need to be aware. It is a role that is of great benefit to young people. Some people think that the term “caregiver” automatically implies something difficult or negative. I feel that this concept should be re-examined. It’s okay to be happy being a caregiver! It brings a lot of positivity.

Five positive thoughts shared by young caregivers interviewed by Anne-Sophie

  1. Being a caregiver is positive and rewarding;
  2. Caregiving helps to develop good family, friends and close relationships;
  3. Caregiving helps define identity as well as professional and personal aspirations;
  4. The recognition of the parent who is being helped is an important aspect; it is a bit like a two-way street. The person being helped also offers help and support to the young caregiver;
  5. When the support network is understanding, when friends understand that the young person will not be able to go out on Saturday night, when the school understands that the young person’s lateness is due to an obligation regarding the person being helped, there is reciprocity and protection.
Deuil-jeunesse 2

Interview by Karine Cloutier, Communications Project Manager at L’Appui pour les proches aidants. Many thanks to Anne-Sophie for this insightful discussion!

For more info:

Did you like this article?

Subscribe to the Appuilettre, the Newsletter for caregivers, and receive each month, testimonials, thematic files and interviews.

east Subscribe to l'Appuilettre

Need to talk?

Contact our Caregiver Support Helpline for counselling, information et referrals.

Every day from 8 a.m. to 8 p.m.

Free of charge.

call  Caregiver info :  1 855 852-7784