Caring for a family member with a neurodevelopmental disability (NDD) can be challenging, often leading to high levels of anxiety and depression. To address this, our team of clinicians, scientists, caregivers, and trainees co-developed Caring for the Caregiver Acceptance and Commitment Training (CC-ACT), a group-based intervention. This intervention, co-led by trained caregivers and clinicians, helps caregivers develop skills to cope and improve their well-being. To date, we have successfully trained 80 caregivers and 100 clinicians from across Canada and shown how the program is helping families.

However, challenges remain to scaling up the intervention. Many underserved caregivers face barriers to accessing the intervention, including systemic inequities, language differences, and stigma. Additionally, long-term sustainability requires institutional support, such as funding and policy integration. To address these challenges, we will work with local teams to adapt the intervention to meet the needs of diverse, under-served caregivers (i.e., Black caregivers, fathers, neurodivergent caregivers, and Francophone caregivers). We will also establish regional and national groups to support sustainable scale-up by facilitating regional collaborations, developing policy recommendations, enhancing a national training model, and supporting advocacy. This project will improve the accessibility of CC-ACT, an evidence-based caregiver support intervention, and support its scale-up across Canada.

 

Award

  • Kids Brain Health Network: $200,000
  • Brain Canada: $200,000

 

Partners

  • Azrieli Foundation
  • BC Centre for Ability
  • Siblings Canada
  • Centre for Addictions and Mental Health (CAMH)

 

Team

  • Principal Investigator: Dr. Johanna Lake
  • Co-Principal Investigator: Avra Selick
  • Co-Principal Investigator: Dr. Kenneth Fung
  • Co-Principal Investigator: Dr. Yona Lunsky
  • Co-Principal Investigator and Family Partner: Lee Steel
  • Co-Principal Investigator and Family Partner: Jodie Siu
  • Co-Applicant and Family Partner: Kendra Thomson
  • Co-Applicant: Dr. Jonathan Weiss
  • Co-Applicant: Claire de Oliveira
  • Co-Applicant: Kayla Lauzon
  • Co-Applicant: Dr. Ullanda Niel
  • Co-Applicant: Dr. Jennifer Baumbusch
  • Co-Applicant: Dr. Valerie Courchesne
  • Co-Applicant: Dr. Jessica Brian
  • Co-Applicant: Dr. Melanie Penner
  • Co-Applicant: Dr. Ami Tint
  • Co-Applicant: Dr. Brianne Redquest
  • Co-Applicant: Dorothee Chopamba
  • Co-Applicant: Sacha Bailey
  • Co-Applicant: Dr. Clara Marty
  • Co-Applicant: Dr. Hadas Dahary
  • Co-Applicant: Dr. Louisa Man
  • Co-Applicant: Dr. Alex Porthukaran
  • Co-Applicant: Sabrina Propper
  • Caregiver Partner: Sheila Phillips
  • Caregiver Partner: Jodie Siu
  • Caregiver Partner: Natalie Miyake
  • Caregiver Partner: Alifa Khan
  • Caregiver Partner: Clare Alexander-Arias
  • Caregiver Partner: Rachel Whynot
  • Caregiver Partner: Zoe Kariunas

 

Family Story

Bringing mental health support to Black caregivers through Acceptance and Commitment Training (ACT)