No Caregiver Left Behind
Building Resilience in the Shadows of Support.
When Lee Steel’s son Eric was diagnosed with autism and learning difficulties at age three, she immediately felt the pressure. She was now the mother of a child with a neurodevelopmental disability (NDD), and it was up to her to ensure he got all the support he needed.
“When you’re given that diagnosis, you have to hit the ground running. There’s a messaging that the more that you can help your child with early intervention, then the better their prognosis will be in the future. I felt that Eric’s future was up to me and what I did in many ways,” she told Mind Over Matter®.
“I felt like I had to just push down my feelings about any sadness I had, any fears I had and just get going.”
And so she did. Learning everything she could about his condition and what could be done for him. Advocating for him. All the while trying to suppress feelings of guilt that she was not giving enough attention to her younger daughter.
Lee kept pushing herself until a moment of clarity came crashing in during a visit to Eric’s developmental pediatrician.
SHE SAID, ‘HOW ARE YOU DOING?’ AND THAT’S WHEN MY WELL-CULTIVATED MASK OF COPING CRUMBLED, AND I WAS ABLE TO SAY: ‘NOT WELL AT ALL.’
“Because prior to that, I would always be saying I’m doing this, and I’m doing that for him, and they’d be like, oh, you’re super mom. Meanwhile inside my health is starting to give out and I’m feeling marital tension and I feel like I’m like giving my daughter crumbs.”
Her marriage eventually ended, and she started having a series of health problems. The challenges of caregiving exacted a heavy toll, a common scenario among parents of children with NDDs.
“When working with children and youth, it’s true that we don’t often think about family caregivers’ well-being; so much of the focus is on how to support their child,” said Dr. Johanna Lake, a scientist at the Centre for Addiction and Mental Health (CAMH) in Toronto.
“Caregivers too are always looking for ways to support their children. That’s the nature of parenting to some extent. But it’s really hard to show up for your family member in a helpful way when you’re not doing well yourself.”
A DIFFERENT WAY
Recognizing a gap of care for caregivers, Dr. Kenneth Fung, a psychiatrist and clinician investigator at University Health Network, alongside family caregivers and colleagues at CAMH, co-developed a program to help families of people with neurodevelopmental disabilities cope with these pressures. It’s called Caring for the Caregiver Acceptance and Commitment Training (CC-ACT), and it is a group-based intervention that teaches caregivers skills to cope and build resilience.
The program was designed and is co-delivered by clinicians and trained caregivers, working in partnership. Participants learn about Acceptance and Commitment Training (ACT) through a series of experiential exercises and small group sharing.
IT’S A BIT OF A SHIFT WHERE WE’RE SAYING THAT DIFFICULT THOUGHTS AND FEELINGS ARE ACTUALLY PART OF THE HUMAN EXPERIENCE.
Dr. Lake continued: “So instead of trying to change those thoughts or feelings or push them away or say we shouldn’t have them, we teach ACT concepts like acceptance and diffusion.
“We allow ourselves to acknowledge that we’re having a difficult thought or feeling, while at the same time creating some space from those thoughts or feelings, so we aren’t stuck to them and they don’t overwhelm us. And we do this in a way that is compassionate and kind to ourselves.”
In 2015, Lee saw a flyer titled “Caring for the Caregiver,” which led her to attend her first workshop. It immediately struck a chord.
“ACT has been life changing for me, and I’m always excited to share how beneficial ACT is for caregivers and adult siblings,” she said.
“It gave me a different set of coping skills, a different way of relating to myself and my world. These skills helped me relate to what I was going through in a much more compassionate way, because I wasn’t being self-compassionate.”
WHEN YOU’RE GIVEN THE MESSAGE THAT YOUR LOVED ONE’S FUTURE IS IN YOUR HANDS, IT’S HARD TO NOT FEEL A LOT OF PRESSURE.
She was asked to become a co-facilitator. Having a caregiver with lived experience in the room is an essential part of the program. It has already made a difference in many lives. To date, they have trained more than 80 caregivers and 100 clinicians from across Canada.
HELPING MORE CAREGIVERS
Now, thanks to funding from Brain Canada and Kids Brain Health Network’s (KBHN’s) Innovation and Implementation Programs, there is a new initiative to broaden its reach.
The project, titled No Caregiver Left Behind: Addressing Accessibility and Sustainability of an ACT Intervention for Family Caregivers of People with Neurodevelopmental Disabilities, aims to find ways of reaching caregivers who have not been able to access the program.
“Part of what we’re hoping to do with this grant is to really understand what are the things that are making it difficult for people to hear about or participate in the program and then how can we address those barriers,” said Dr. Lake, who is co-leading the project.
One barrier might be language, which is why ACT is being translated into French. They are also offering the intervention virtually, to make it easier for people in remote locations to participate. They would also like to reach more fathers in the sessions and to expand to more culturally diverse groups.
“That’s why it’s called No Caregiver Left Behind,” said Dr. Lake. The grant supporting ACT is a natural outgrowth of the work of KBHN, whose mission is to expand the reach of advancements that support children with neurodevelopmental disabilities and their families.
“ACT is a powerful, evidence-based program that has already made a meaningful difference in the lives of many caregivers,” said Dr. Jennifer Zwicker, Chief Scientist at KBHN.
“Caregivers are the invisible backbone of support for children with neurodevelopmental disabilities, and too often, their needs are overlooked. We’re proud to support this initiative to ensure no caregiver – regardless of where they live or what community they come from – is left behind.”
“Research shows that supporting the mental health of caregivers can make a real difference – not just for them, but for the children and families they care for,” said Dr. Viviane Poupon, President and CEO of Brain Canada. “By investing in programs like ACT, we’re helping to build a more informed and supportive system for families living with neurodevelopmental disabilities.”
IT’S PART OF OUR BROADER COMMITMENT TO ADVANCING BRAIN HEALTH ACROSS THE LIFESPAN – AND ENSURING NO CAREGIVER IS LEFT BEHIND.
Lee Steel’s son Eric is now in his early 30s. The pressures are still there for her, particularly thoughts about what happens to him after she is gone. But she is grateful for the tools that the ACT program brought her and loves sharing them in the workshops that she continues to co-lead.
“Oh, it’s such a joy because I really do feel that caregivers leave an ACT workshop so much more self-compassionate.”
Source: Mind Over Matter V21