Dr. Johanna Lake, Lee Steel & Jodie Siu are leaders of the Collaborative ACT support program for caregivers. They coach teams to deliver workshops for parents & families from Pacific to Atlantic Canada.
Meet the team creating a collaborative ACT (Acceptance and Commitment Training) model with and for caregivers
An expanding body of research shows that parents’ mental health is directly linked to their ability to support a good quality of life for their children. This link is especially significant for caregivers of children with neurodevelopmental disabilities.
To help their children thrive, many caregivers become self-taught advocates, navigating complex healthcare and education systems. These demands can leave them feeling depleted and struggling with their own mental health and wellbeing.
To address these challenges, Kids Brain Health Network (KBHN) is co-funding a new type of mental health support program for caregivers of children with neurodevelopmental disabilities—in partnership with Brain Canada and The Azrieli Foundation/La Fondation Azrieli through KBHN’s Strategic Investment Fund (SIF).
The collaborative ACT model—created with and for caregivers
Building on the work of Dr. Kenneth Fung and Dr. Yona Lunsky, the new collaborative ACT model is a partnership between experienced caregivers who have trained as workshop facilitators, along with clinicians. They are teaming up to bring an evidence-informed approach called ACT (Acceptance and Commitment Training) to small groups of caregivers looking for help with their own wellbeing.
In spring 2022, the team began offering experiential workshops in six communities across Canada, researching the impacts of an ACT support program that is collaboratively designed and delivered by clinicians and caregivers.
“Clinicians and caregivers train together to deliver the workshops, and we as caregivers are really integral from the beginning of the project,” says Lee Steel. “It’s a collaboration in the truest sense of the word.”
The collaborative ACT model team
Lee Steel and Jodie Siu are trained ACT workshop facilitators, and parents of people with neurodevelopmental disabilities. The colleagues first met several years ago, when Jodie attended a workshop Lee was facilitating. Lee is the Family Advisor at the Azrieli Adult Neurodevelopmental Centre, and Jodie is a Caregiver Facilitator with BC Centre for Ability. Their training, combined with their experiences in parenting means they bring essential skills to supporting fellow caregivers through this program.
Dr. Johanna Lake is the project’s lead investigator, and one of Jodie and Lee’s closest collaborators—along with a research team that includes KBHN trainees. She is a clinician, scientist and psychologist with the Azrieli Adult Neurodevelopmental Centre at Toronto’s Centre for Addiction and Mental Health (CAMH).
Johanna’s experiences with family members who identify as neurodivergent led her to a career where she supports people with neurodevelopmental differences to flourish. Working in a residential unit for youth with neurodevelopmental disabilities and mental health concerns showed Johanna the strengths and gifts each individual brings to the world, even with the challenges they encounter.
Impacts of the collaborative ACT model for caregivers
The ACT research team is learning important lessons about how these workshops impact families. Johanna notes that ACT offers benefits beyond the workshops, since the approach can be practiced in everyday life. “We are learning that these workshops improve caregivers’ wellbeing, including reducing symptoms of depression, while improving physical health,” she says. “So far, 96% of caregivers appreciate that the intervention is co-led by other caregivers. This perspective adds a level of trust and credibility that would not exist if it were led by clinicians alone.”
“There’s a benefit to hearing ACT delivered by someone who has walked in your shoes,” says Jodie.
“The Azrieli Foundation supports ACT-based interventions for caregivers, as it has been shown to reduce stress and help caregivers feel less isolated,” says Liv Mendelsohn, Executive Director of the Azrieli Foundation’s Canadian Centre for Caregiving Excellence. “We are thrilled to see this program grow by training more people with lived experience to deliver the program. It is important for caregivers to prioritize their own mental health needs, and the ACT program provides participants with the necessary tools to do it.”
Lee shares that ACT workshops for caregivers lead to greater capacity to care for loved ones with neurodevelopmental disabilities. “I can’t give to my loved one what I don’t have myself,” says Lee. “ACT gives me a more compassionate way of viewing my situation, and when I bring that compassion to myself I have much more to give.”
KBHN’s support also allows Johanna, Lee and Jodie to provide customized coaching for all ACT workshop teams. This approach ensures workshop leaders have access to the ongoing guidance they need to provide effective support to caregivers. “We are bringing ACT exercises off the page and into life in a real way, so that workshop teams feel more empowered to facilitate,” says Lee.
Expanding the impact of the collaborative ACT model for caregivers
In addition to the positive impacts caregivers and clinicians are already reporting, the team are looking to the future. By 2024, they will deliver 12 mental health support workshops to more than 160 caregivers to communities in Newfoundland, P.E.I., Nova Scotia, Quebec, Ontario, Alberta and B.C.
After examining the challenges and benefits of implementing ACT workshops in these communities, they will develop a training toolkit to help organizations deliver the program in more places. From the perspectives of participants, facilitators and organizations, the collaborative ACT support program for caregivers shows promise for families living with neurodevelopmental disabilities across Canada—and potential for informing global perspectives in neurodevelopmental science.
