Powered by Lived Experience: How Elevate Shapes CF Research, Care, and Support

Behind meaningful progress in cystic fibrosis care is the insight of people who live it every day. Through Elevate, members share their lived experience to help guide research, programs, and support across Canada. Here’s a look at how Elevate members helped drive impact in 2024–25.

Cystic Fibrosis Canada Initiatives:

Identified Needed Supports for Newly Diagnosed Families

Elevate members who participated in our Caregiver Survey in late 2024 helped reveal the needs and greatest challenges of parents and guardians during their infant’s first year. These insights are guiding new resources and conversations.

Read more: Supporting Caregivers of Newly Diagnosed Infants Blog

Guided Our Work on Mental Health

Elevate members attended focus groups to shape Cystic Fibrosis Canada’s mental health planning and our new Mental Health Resource Hub. They  affirmed the importance of:

·       Peer support and connecting with others

·       Educating mental health professionals about CF

·       Inclusive resources and supports for people living with CF, their parents, guardians and family members

·       Acknowledgment about Trikafta and mental health issues

Explore the Mental Health Resource Hub

Informed National Guidelines

A dedicated group of Community Advisory Council members from across Canada has been guiding the work of the Canadian Consensus Guidelines/Standards of Care. Elevate  helped shape messaging, staffing guidelines, and how updates are shared, such as easy-to-read summaries, visuals and downloadable PDFs through clinics, social media, email, and our website. These insights will continue to be drawn on as this work moves forward.

Information: https://cysticfibrosis.ca/guidelines-and-standards-of-care

Shared Insight into Living with CF
Reducing the daily challenges of living with CF is one of our strategic goals. People living with CF and their families told us their greatest challenges in the Burden of Care Survey, including:

·       Impact on daily life activities

·       Doing daily CF treatments

·       Uncertainty about the future

·       Travel time and transportation costs for clinic visits

·       Anxiety

·       Hospitalizations, infections, and CF-related diabetes

·       Access to disability resources and mental health supports

Their feedback is guiding our programs, services and advocacy efforts to help reduce the burden of care.

Assessed Infection Prevention & Control Policies Together
We’re currently reviewing our infection prevention and control policies for events and meetings. The  input of Elevate members is helping us create guidelines that make in-person participation safe and meaningful at CF-related events. Look for updates in 2026!

Shaped  Innovative Resources for Parents and Guardians

In 2024, Jasleen Kaur, a Clinical Psychology graduate student at the University of Regina, studied the well-being of Canadian parents and guardians of children with CF. Participants filled out a short questionnaire and took part in an interview. The feedback from Elevate about what works, what doesn’t, and what should be included in an online resource was key. This input will help create an easy-to-access, tailored online tool for CF parents and guardians.

Birth Control in Women Living with CF

A 2025 survey looked at birth control experiences of American and Canadian women living with CF. Intrauterine devices, the pill, and condoms or barrier methods are the most common used. While most weren’t trying to get pregnant, just over half use birth control. Side effects matter more than effectiveness and were the main reason for stopping. Many wanted information from their CF care team or a gynecologist, but most got it from other providers. Surprisingly, most felt that birth control talks should start at age 14-15, yet these happen much later. One-third use emergency contraception—higher than the national averages. Participants also thought that common CF antibiotics reduce birth control effectiveness - they don’t. Results suggest starting contraception education in adolescence, especially about its side effects and medication interactions, and involving experts like pharmacists.

Helping Siblings Thrive in CF Families

The Internet-delivered Cystic Fibrosis Mental Health Prevention, Wellness, and Resource (iCF-PWR) program is an online, self-guided tool designed for mental health prevention for families living with cystic fibrosis. Shelby Shivak, a PhD student at the University of Manitoba, led a study to test this program with non-CF siblings in CF families. Early results show that iCF-PWR helped prevent or reduce feelings of depression and anxiety in non-CF siblings. It also improved their understanding about CF, quality of life, and relationship with the sibling who lives with CF.

Thank you, Elevate members.

Every survey completed, every conversation joined, and every insight shared is building a better future for Canadians with CF and bringing us closer to our vision of a world without cystic fibrosis!

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.