Lockdown 'loneliness' falls heavily on youth with cerebral palsy
By Louise Kinross
Everyone is feeling stressed and uneasy during the COVID-19 lockdown.
But young adults with cerebral palsy face some unique pressures.
That’s why Dr. Jan Willem Gorter, a children's rehab scientist and director of CanChild at McMaster University, held a CP-NET webinar on mental health in teens and young adults with cerebral palsy. Over 100 people participated and you can watch a video of it.
Last year, BLOOM interviewed the authors of a British population-based study that found adults with cerebral palsy had a 28 per cent increased risk of being diagnosed with depression, and a 40 per cent greater risk of being diagnosed with anxiety.
We spoke to Dr. Gorter to learn more about his workshop.
BLOOM: What do we know about mental health in teens and young adults with cerebral palsy?
Dr. Jan Willem Gorter: I think it’s under-diagnosed and underestimated. There’s also a difference between having a formal diagnosis of anxiety disorder or clinical depression—as in that British study—and having symptoms of depression and anxiety, but they don’t meet the cut-off for a diagnosis. One in three participants in our My Story study has symptoms. And that’s where the suffering comes, because you’re struggling but you may not get mental-health services.
BLOOM: A CanChild paper on mental health in people with cerebral palsy suggested clinicians were so focused on the physical aspects of the condition, that they often missed mental-health impacts.
Dr. Jan Willem Gorter: Because people still view cerebral palsy as mainly a motor, or physical, disability, there isn’t enough attention paid to mental health. You only find out if you ask, and truly are interested in how young people are doing from a mental-health perspective.
There is also the issue that mental-health professionals are not always sure how to treat people with disabilities.
BLOOM: I recall a woman with cerebral palsy commenting on a BLOOM post that when she was prescribed an antidepressant, it worsened her spasticity, so it seemed common medications sometimes weren’t a good fit.
Dr. Jan Willem Gorter: Absolutely. Antidepressant medication and its side effects in adults with cerebral palsy hasn’t been systematically studied.
BLOOM: What is the My Story study, and how will it touch on mental health?
Dr. Jan Willem Gorter: We started with a cohort of 60 youth and young adults from multiple sites in Ontario about seven years ago. On an annual basis, we send them online surveys with questionnaires about physical and mental health and wellbeing. We also ask specific questions related to stress, and take hair samples to assess the stress hormone and how that’s related to symptoms of depression or anxiety.
BLOOM: Your workshop is looking at mental health during COVID19. How is social isolation under the pandemic impacting these young people?
Dr. Jan Willem Gorter: It’s too early to have any specific data. But from our interactions with the Ontario Federation for Cerebral Palsy (OFCP) and our study participants, we hear that loneliness is a theme.
BLOOM: I guess their routine, whether school or community programs or work, has been disrupted. What are ways to address that loneliness?
Dr. Jan Willem Gorter: You mentioned one—routine. It’s harder now, but it’s still important. We still need to work on the basics, like overall fitness, making sure you are physically active, have enough rest and sleep, and are eating healthy as much as possible.
We also need to acknowledge that there are more demands on us. We need to focus on what’s important to us, and let other things go. Don’t try to do it all. It’s not a normal situation, you can’t be as productive as you used to be, and don’t expect yourself to function that way.
BLOOM: I’ve heard a lot of reassuring messages to the population at large about how feeling anxious and unfocused is normal now.
Dr. Jan Willem Gorter: It’s normal, as you say, for all of us. We need to have that reassurance, that we can’t be as productive. At the same time, processing information can take more time for individuals with cerebral palsy. If you think about all of the information that's coming to us about the pandemic, it’s hard to keep up with what’s going on in the world, and what it means for me. The OFCP says they’ve changed the way they’re communicating. They’re sending out smaller chunks of information more regularly, instead of the once-a-month newsletter. I think that’s a good strategy. A lot of the questions they get are related to health and resources and how to find professionals that can help.
BLOOM: How does a young adult with cerebral palsy get mental-health counselling?
Dr. Jan Willem Gorter: That’s a hard question to answer. Before COVID19 it was already an issue that there aren’t many mental-health professionals with experience with cerebral palsy. It’s often very hard to get the help they’re looking for. The family doctor is the first line, and contacting your rehab-service provider.
The OFCP is offering support in the social sense. They’re aware, more than ever, of the need to connect with others.
BLOOM: I guess there are other ways to connect with people with cerebral palsy online?
Dr. Jan Willem Gorter: The Adult Cerebral Palsy Hub in Britain is one group. In our workshop, we’d like to open it up to participants to hear about what strategies they’re using.
BLOOM: I'm putting in a plug for Holland Bloorview's new online alumni network, as I know there have been posts about coping during the pandemic. Also, we have a very active youth advisory council, and I'm thinking this may be a resource for youth at children's treatment centres around the country. You mentioned that people with cerebral palsy feel they haven’t had a voice in how the pandemic was managed. Can you explain?
Dr. Jan Willem Gorter: Yes, when it comes to access to health care, and making sure they are taken care of. There wasn’t much clarity on how people with disabilities, including people with cerebral palsy, would be treated if they were admitted to hospital.
BLOOM: That involves the triage protocols for who would get access to intensive care.
Dr. Jan Willem Gorter: Yes. And at a very practical level, we’ve seen services related to personal support workers scaled back a lot, and individuals who depend on those workers having difficulties getting gloves or other equipment.
BLOOM: And where would they get masks and gloves given the current shortage! It seems that we are finally seeing the lack of personal protective equipment in long-term care addressed, but no one has touched the issue related to people who rely on home care.
Dr. Jan Willem Gorter: These individuals and families are vulnerable, not only from a fiscal standpoint, but their mental health is often suffering, and there’s a need for a collective voice to bring these issues forward. As professionals, we have a role to advocate.
BLOOM: What can people expect at your workshop?
Dr. Jan Willem Gorter: I will do a presentation to share our findings and contextualize them, and then move to some strategies and potential resources. It's a two-hour workshop, so we'd like to open it up to ask participants to share their what works for them. We have a lot to learn from each other.
Click here to sign up for the free CP-NET webinar.
