Helping to decrease the emotional burden for people in Canada with cystic fibrosis

Mental health and wellness are essential components to overall health for people living with chronic illnesses like cystic fibrosis (CF), but it’s also important for their parents, caregivers and siblings.  

At Cystic Fibrosis Canada, we have heard from our community time and time again that for many, the emotional burden of managing the disease is as much a priority as an individual's physical health. In fact, the International Depression Epidemiological Study (TIDES), which provided global data on the level of anxiety and depression in people living with CF and parental caregivers found the prevalence of anxiety and depression is two to three times higher in people living with CF and their caregivers than that of the general population. Pat MacDiarmid, a social worker at the CF clinic at St. Paul’s Hospital in Vancouver, explains that “most clinics that have done screenings in the U.S. and in Canada have found their scores are actually higher than what the TIDES study showed.” 

In our own 2023 Cystic Fibrosis Canada Community Survey, as much as 42% of respondents under 30 years of age cited mental health support as a top priority, and many caregivers and people living with the disease across all age groups also identified mental health as a priority.  

While many clinics introduced mental health screening years ago, not all clinics have additional resources for patients such as a psychiatrist or psychologist. Yet, each team will work together to support patients' mental health no matter what resources they have.  

We know that at our Canadian clinics, staff are using all the tools available to them to support their patients. However, we also know that our community is looking for additional support related to improving mental wellness and reducing the emotional burden.  

That is why we’re proud to launch our new Mental Health Resource Hub, a new directory of resources designed to help reduce the emotional burden of those living with CF and their caregivers. Our hub will be updated throughout the year to ensure we are connecting our community with current and timely resources. It is our hope that this hub will also support Canadian clinics to connect people in Canada with cystic fibrosis to the mental health resources available to them.  

Our hub was developed in consultation with individuals living with cystic fibrosis, caregivers and Canadian CF social workers. and aligns with Cystic Fibrosis Canada's strategic approach to connecting people to resources so that the emotional impacts of the disease are reduced, and ensuring an inclusive environment where everyone is heard, seen and respected. The Mental Health Resource Hub can also serve as a support tool for the 40 Canadian cystic fibrosis clinics.