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Caring for an infant newly diagnosed with cystic fibrosis (CF) is a life-changing experience. To better understand the challenges, supports and needs of CF parents and guardians, Cystic Fibrosis Canada conducted a national survey at the end of 2024 in both English and French.
The community's response to the survey was incredible - 114 people from across Canada shared their experiences.
We are grateful to the 8 parents and guardians who served on an advisory group to guide the survey questions and analysis. At a recent board meeting, our Board of Directors have endorsed a workplan to improve CF Canada’s information and support offerings for parents and guardians of newly diagnosed infants, which is based on the survey results and extensive community consultations.
Thanks to all who participated! Here’s what we learned from your input:
Most challenging experiences
The greatest challenges experienced during the first year of caring for an infant living with CF include:
Support Gaps and Opportunities
Several areas of support were identified. Over half of survey respondents said having educational materials or training helped them feel supported. About half sought support or information from general online resources, like Google searching, but said these did not help them feel supported.
Those of you who received a CF Canada newborn kit – a care package program we ran in collaboration with CF clinics until it was paused during the COVID19 pandemic – told us how impactful those were.
The survey showed peer support is seen as a great need to help improve caregivers’ wellbeing. Only a handful of survey respondents accessed support from peers during their infant’s first year. On a related note, Cystic Fibrosis Canada has recently launched a peer support pilot program, Peer Connect, to connect the CF community in a safe, supportive, virtual space. We are pleased this is already making a difference for individuals with CF as well as parents and guardians.
As mental health support has been a priority for the community, we also launched our Mental Health Resource Hub in 2025.
Connection with Cystic Fibrosis Canada
About half of survey respondents reported being connected with Cystic Fibrosis Canada during their child’s first year – whether in support of our work, or benefitting from our community connections, resources and programs.
However, about 20% did not know they can be connected and involved with the CF Canada community. We will keep working to reach newly diagnosed families to support them and welcome them to this amazing community.
Looking Ahead
The advisory group helped us create a plan for parents and guardians in their infant’s first year, including new resources, videos, revisiting the newborn care package program and more. We are currently implementing this. Please stay tuned for more opportunities to get involved. A huge thank you to everyone who completed the survey!
Want to be involved in this work?
We’ll be reaching out to Elevate members with future opportunities to consult and provide input into our work to better support parents and guardians of newly diagnosed infants.
Elevate is a virtual community engagement initiative made up of hundreds of Canadians who are affected by cystic fibrosis. Our community members are first-hand experts on the impact of the disease. Elevate enables you to share your experiences through surveys, focus groups and other initiatives to help inform our work.