By Amy Baskin
November 2022
I’ll take you back to the fall of 2020. We’re deep in the pit of pandemic lockdowns and waves. But once a week, I talk with people who really “get it.” They know what it’s like to be housebound while caring for an adult loved one with an intellectual/developmental disability.
Meeting online, we sometimes break into small groups for ten minutes. It feels intimate, seeing each other’s faces, as we sip coffee and chat. At one virtual “breakout”, we discuss the question “What does a good day look like for you now?”
Course participant members shared “A good day now is one when I….”
- have a few minutes to read.
- go for a walk with a friend.
- know my son has something to do and seems happy.
- go to this online course and see your lovely faces!
“The breakout room really worked for me. Talking to people all over the country made me feel less isolated. There was an immediate closeness and sharing. Remarkable during COVID” – Caregiver Course Participant
Although our answers differ, we have one thing in common. A good day is one when we’re together— despite living in different parts of Canada. Once a week, we gather to share our experiences, wisdom, and exhaustion. Together, we learn strategies for coping during an impossible time.
In the fall of 2020, I joined a team including another mother of an adult with IDD, two psychologists (one who is also a sibling caregiver), and two operations staff from the Azrieli Adult Neurodevelopmental Centre—CAMH. Together we developed a six-week online course for family caregivers focused on mental health during COVID-19. An occupational therapist, psychiatrist, and family physician joined us as guest presenters.
The course focused on tough stuff—especially during a pandemic time before vaccines. We talked about coping with loss, getting mental health help for our loved ones, and caring for ourselves when respite was non-existent.
Each week, our team met online to plan the next session. As a mom/caregiver, I gave real-life personal examples and stories. I helped make sure that our course addressed the real-time challenges caregivers were facing.
“I really appreciate the personal stories (from caregivers) throughout the sessions. Although we are separated by distance, it was great to feel a sense of community.” - Caregiver Course Participant
With my background as an adult educator, I helped create ways to bring the course to life—to make it interactive. We all agreed that effective learning happens when adults share their own experiences.
How participants did hands-on learning online:
Course Participants:
- typed their ideas in the onscreen “chat box.”
- did online polls with their viewpoints.
- created “word clouds” together. Everyone’s ideas appeared instantly onscreen.
- discussed topics in small group breakout groups
- tried guided mindfulness exercises together.
After each session, a member of the CAMH team summarized participant ideas along with resources, slides, tools and information. Each week, this was all emailed to participants and posted on our course website. That way, caregivers could easily refer back to tools and strategies.
“I love the way you are utilizing technology. A full, rewarding 1.5 hours each week. And it feels so good knowing that you’re not alone.” – Caregiver Course Participant
We also sent out a satisfaction survey after each session. With this feedback, we met to discuss what went well in each session and what could be improved. Then, we tweaked our teaching methods and content to meet the group’s needs.
Being both a facilitator and a learner was powerful for me. Each week, as COVID-19 evolved, I needed answers to difficult questions. I was not alone.
Caregiver course participants asked:
- What happens if my daughter gets COVID and is hospitalized?
- What happens if I’m hospitalized? Who will care for my loved one?
- How do I reach out for mental health support? For me? For my loved one?
- How do I support my son with so many losses? He’s lost his daily routine and he’s acting out.
Together we learned about resources and best practices for coping with emergencies and for mental health challenges. Together we shared our experiences of grief and loss. And we acknowledged that it was ok to be a “good enough” caregiver.
Sometimes it’s hard to know what interventions are helpful for caregivers like us. So, it’s meaningful that this course was created as part of a CIHR (Canadian Institutes of Health Research) research study—looking at the impact of a virtual course for caregivers.
Learning, well-being, and efficacy (belief in one’s abilities to meet challenges) were assessed before and after the course, and again eight weeks after the course ended.
The results? After taking the course, 126 family caregivers like me reported that they:
- enjoyed the course.
- learned new skills.
- felt more confident managing their own mental health and their family member’s mental health.
- made changes such as using tools to improve health care communication.
- felt more connected and less alone.
Our interactive, online educational course positively impacted participants’ well-being. And these results were long-lasting. Improvements families reported were maintained two months after the course ended.
Being both a course facilitator and a caregiver learner has done wonders for my own mental health. I’ve gained confidence, community, and resources to support my daughter as the pandemic continues. And to maintain my own resilience.
So, during the pandemic, what does a good day look like for me? A good day is one where I create, teach and learn with a talented team of clinicians and caregivers. Priceless.
What’s next?
From Dr. Yona Lunsky, Director, Azrieli Adult Neurodevelopmental Centre
Before the pandemic, we used to think that meetings would happen in person and that we needed to meet other people closer to where we live. But this course showed us that in a country as large as Canada, we can feel less far apart through how we interact online, and what we interact about.
Since completing this project, we have taken another step, applying what we learned to produce a new course that combines attention on mental health as well as health and healthcare more generally. Using the same online format, and the combination of caregivers and clinicians to create a powerful teaching team, we expanded the number of families involved in the teaching and added to what we teach. We have just wrapped up data collection for this project and hope to share our findings soon.
Intrigued? Want to get involved? Check out the resources below:
- Want to learn more about the published study?
- Want to find resources and learn about upcoming courses and projects?
- Sign up for the HCARDD monthly newsletter summarizing studies and opportunities for families, H-CARDD Connects.
- Many course-related health and mental health resources related can be found at the www.hcarddcovid.com/info page.
- Want to get involved?
- To learn more about family engagement efforts and other activities at the Azrieli Adult Neurodevelopmental Centre, please contact Yousef Safar at [email protected].
