Four Considerations to Support Young Caregivers

“I don’t know what a teenage life is like… but I wouldn’t want to change anything.”

Young caregivers are usually responsible for someone who may be living with an illness, disability, mental health or substance use challenge. This work often goes unrecognized, even when it can cause many challenges in their day-to-day lives, such as lack of sleep, difficulty concentrating, latenesses or absences, and lack of time. 

Caregiving often reflects the important role that young people play within their families and communities. It can also provide opportunities for youth to build closeness, foster empathy and compassion, and develop a sense of pride. There are over half a million young caregivers in Ontario alone, and this number may not even accurately reflect the many children and youth who are caring for loved ones.  

YouthREX co-hosted a webinar with the Ontario Caregiver Organization titled “What Young Caregivers Want You to Know.”

I was joined in facilitating this conversation by Kathleen Slemon, Program Lead, Peer Support and Young Caregiver Initiatives, with the Ontario Caregiver Organization, herself a former young caregiver. We welcomed two young people who shared their caregiving experiences with remarkable honesty, insight, and vulnerability — Liam Genik and Jillian Lynch. 

Liam became a young caregiver to his grandparents when he was in grade 11; his grandfather suffered from Alzheimer’s, and his grandmother struggled with severe arthritis. Jillian is a caregiver to her brother, Myles, who was born with cystic fibrosis and became the first Canadian (and youngest person in the world) to successfully receive three double lung transplants.

So, what did these young caregivers want you to know? Here are four considerations for how youth workers can recognize, support, and ally with young caregivers:

1. Validate the feelings and experiences of young caregivers. 

Young people are not often imagined to be caregivers, so their caregiving may not be recognized as such, even by frontline workers and community agencies. They may also be excluded from conversations about caregiving by healthcare practitioners.

A young person engaged in caregiving may not actually recognize that they are a caregiver. In fact, caregiving may be normalized as part of being a child, sibling, grandchild, partner or friend, and understood by others as a familial duty or responsibility. Liam shared that he did not realize he had been a caregiver until after his grandparents had passed away. Regardless of how it is conceptualized by the young person, caregiving may be central to their identity, sense of self, and understanding of their relationships. 

Youth workers who suspect a young person may be a caregiver could consider the following questions (approved by young caregivers!) as examples for engaging and exploring:

“I heard you say that you spent all weekend at the hospital with your sister, would you be okay with telling me more about that?”

“As you were talking, a thought came to mind: some youth are ‘caregivers’, which means that they provide some sort of care for someone in their life. When I heard you say ______, it made me wonder if maybe you were, too. What do you think?”

“I often see/hear of you providing support for your partner. Do you often support them? If so, how?”

Do not minimize or dismiss a young person’s caregiving responsibilities. Listen, affirm, and reflect what a young person shares with you about their specific experiences.

2. Acknowledge that the life of a young caregiver is complex.

Approach young caregivers with curiosity, empathy, and care. The factors impacting a caregiving role can include:

• the type of illness their care recipient may be experiencing, and its chronicity
• the availability of external supports
• the developmental age of the caregiver
• the caregiver’s particular familial and/or community context

Young caregivers—and caregivers of all ages—have been impacted by the COVID-19 pandemic in a variety of ways; for example, learning and/or working from home may offer caregivers greater flexibility, but there may be more demands on their time, and it may be difficult to meet these multiple demands simultaneously. Jillian shared the challenges of not being able to visit her brother in the hospital due to COVID restrictions, and the difficulty in coordinating support when Myles contracted COVID and she was forced to quarantine.

3. Recognize that there are different types of caregiving

The types of support a young caregiver may be providing will vary, and could include emotional support, help around the house and with mobility, child care, translation, appointment scheduling, income support, and more. Some caregivers may be supporting a loved one from a distance, and this type of caregiving may not always be recognized and affirmed.

A young person may not always be the primary caregiver. Initially, different members of Liam’s family were supporting his grandparents in different ways; he helped his grandmother around the apartment, and with going on walks or to the store, and he made sure that his grandfather did not take work calls from those who knew he was not in his right state of mind and may have had ill intent.

A young person may also be engaging in levels of care that an adult would not assume. Jillian referred to herself as a “mini-Mom”, taking on caregiving responsibilities very early in her life, and she has continued to support Myles’s treatment plan in different ways over time (bringing him favourite toys, ensuring that he has taken his medication or other treatments, and even administering needles when asked).

Young caregivers may not always be attended to in the ways that they need, or offered support when it is most needed, so youth workers should be attuned to the individual needs of each young caregiver, especially during times of emergency and increased stress or anxiety. Jillian was sometimes left at home as a child when her brother needed care; when she did travel to Toronto from her small rural community, she did not always receive guidance or support in navigating the city, and sometimes spent hours anxiously awaiting news during her brother’s surgeries without any emotional support.

4. Support young caregivers to develop coping strategies:

       a) For boundary-setting and accessing help and support.

Youth workers can explore certain questions to support a young caregiver in setting boundaries and understanding where and when to access external supports:

• How do you know (i.e. what are the indicators?) when things are getting harder and that you might need more support? 
• How do you recognize a crisis situation? 
• Is there a protocol in place for emergencies? Do you know who to call?

You can also help a young caregiver to identify boundaries that they will not cross (for example, not answering a text while at school or work, outside of emergencies) and hold them accountable, understanding that taking care of themselves is central to their role as caregivers.

This year, the Ontario Caregiver Organization launched Young Caregivers Connect; consider sharing this resource with young caregivers, as the online platform also facilitates peer support.

       b) For self-care.

Youth workers can support young caregivers in developing a list of the people, agencies, and organizations that can help provide support when things get challenging, and explore who in their networks they can reach out to in order to vent or for respite.

You can also help a young caregiver to create unique plans for self-care, including activities and strategies that will centre their needs and their joy; for example, gratitude or mindfulness practices. Both Liam and Jillian expressed the importance of self-care in order to be better caregivers to others, and they specifically shared how much they needed to connect and engage with others, especially supportive friends. Liam also shared that exercise and weight training were important aspects of his individual self-care.

Listening to Liam and Jillian share their experiences and insights was a privilege, and we encourage you to watch the archived recording of this conversation on our Knowledge Hub.