Community Voice: Monthly Results Update
February 2025 Edition
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Dear Community Voice Member,
Welcome to the February 2025 edition of the Monthly Results Updates!
In these digests, we share the impact Community Voice members are making through participation in recent opportunities. In this month’s edition, we’re sharing more about:
- Results from the Community Voice: 2024 End-of-Year Survey
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Highlights from the Patient-Provider Communications and Trust Focus Groups
- Update from the Reducing Early Airway Clearance Treatments Focus Groups
- Newly established Lung Transplant Advisory Group
- Update from the CF Peer Connect Recruitment
- New members for the NACFC Program Planning Committee
If you would like to read about past projects, browse previous editions.
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Community Voice: 2024 End-of-Year Survey Results
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Community Voice conducts its annual survey to gather feedback about your experiences as a Community Voice member and how to improve. Listed below you can see a summary of the findings below..
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Members continue to be satisfied with their experience in Community Voice.
- Members continue to feel that their involvement has had a positive impact, including that: they are making a difference in care and research, their perspective and experiences are valued, and they feel included in the CF Foundation's work.
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Members continue to be satisfied with Monthly Results Updates and there is an area of opportunity to improve its readability and content.
- Members have many ideas on how to improve Community Voice, particularly around communication, engagement in recruitment opportunities, and other types of opportunities that members could participate in.
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Members shared insight into what that they wished clinicians, researchers, and the CF Foundation knew about their experience and needs regarding CF and what topics they want addressed moving forward.
You can view the full results via the button below.
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Responses to this survey will be utilized to shape our areas of focus throughout 2025, including member engagement, recognition, and outreach. We would like to thank the 231 members who participated in the survey and provided their invaluable feedback.
Have additional ideas, questions, concerns, or thoughts about how to make Community Voice better? We always welcome your input year-round! Please reach out to us at CommunityVoice@cff.org or contact Community Voice Program Manager Caitlin Mitchell (CMitchell@cff.org) anytime – we’d love to connect with you!
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Patient-Provider Communications and Trust Focus Groups
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Researchers from Emory University and the University of Pittsburgh are working to understand how to support open, effective communication between people with CF and clinical staff, including how to build trust, facilitate difficult conversations, and create collaborative treatment plans. In 2024, community members shared their experiences and perspectives on what successful patient-provider communications and relationships would look like, including:
- People with CF and their family members want to raise or discuss their concerns as part of a conversation with their care teams, rather than by identifying concerns from a list of options.
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Several focus group participants described leaving their center and seeking CF care elsewhere due to poor relationships and feeling unheard by providers.
- There is a need to build trust between people with CF and new care team members during a period of transition or staff turnover or retirement.
These and other information shared during the focus groups is being used to improve communications in care settings, including creating a way to measure strength of communications and patient-provider relationships. Thank you to the 10 Community Voice members who participated in the focus groups!
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Reducing Early Airway Clearance Treatments Focus Groups
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To support the design of a national clinical trial, researchers from Seattle Children’s Hospital and the University of Washington held focus groups with parents and caregivers about their comfort with stopping (or never starting) chronic daily inhaled therapies. The trial will help determine whether children with CF (ages 3-12) who are doing well on Trikafta can safely stop or avoid starting airway clearance treatments, such as Pulmozyme or hypertonic saline. Parents of children with CF noted that they would want to make sure enrolling their child in such a study would be safe, highlighting the importance of regular lung function monitoring and restarting therapies if lung function worsens.
Based on community and care team input, the researchers significantly redesigned the study to include checking lung function before and after initially stopping therapies. Children whose lung function worsens when initial therapies are withdrawn would not be enrolled. After a research design day that will include additional input from parents, the study will launch as a 6-week limited trial, followed by a 46-week broader open trial.
Thank you to the nine Community Voice members who participated in the focus groups!
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“The input of the parents was phenomenal. They had a variety of opinions and were thoughtful advocates for research. I can’t thank them enough for the time they took – their recommendations had a large impact on our design!”
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- clinician and researcher, Seattle Children's
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CF Foundation Lung Transplant Advisory Group
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The newly established CF Foundation Lung Transplant Advisory Group will develop and implement methods of effective, coordinated communication between the CF Foundation Transplant Team and community members who have experienced lung transplantation. In August and November 2024, the advisory group recruited community representatives through Community Voice (open to adults ages 18 and older with CF who have undergone a lung transplant or family members/caregivers of a loved one with CF who has had a lung transplant). We are happy to announce the 19 community members (one not named) who will serve on this group for a one-year term:
Brian Armstrong, April Biggs, Lindsay Briggs, Leisha Cuddihy, Matt Dolan, Jen Eisenmann, Noor Elshaar, Joan Galinkin, Caleigh Haber-Takayama, Elizabeth Kellner, Lynne Korlewitz, Heather McCoy, Inka Nisinbaum, Kasey Raffensperger, Robert Ronnenberg, Christina Schulze, Gerald Sweeney, and Jennifer Weber.
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CF Peer Connect Recruitment
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CF Peer Connect is a one-to-one peer support program for people with CF and their family members ages 16 and older. The program needed new peer mentors, specifically parents of children with CF ages 4 and under. The CF Peer Connect team partnered with Community Voice to recruit new volunteers for the program. Community Voice sent out a quick survey to invite parents of young children with CF and to set up a welcome call with a CF Peer Connect staff member. Through this partnership, four new community members joined CF Peer Connect as peer mentors, allowing for more timely, personalized connections. Based on the kinds of requests received, three out of the four have already provided peer support through a match. We would like to thank the Community Voice members who were willing to listen empathetically and share their experiences with others.
Learn more about CF Peer Connect or request peer support.
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NACFC Program Planning Committee Parent Representative
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The NACFC Program Planning Committee (PPC) brings together CF researchers and clinicians, Foundation staff, and community advisors to shape the annual conference’s educational content. PPC leaders partnered with Community Voice to recruit for one parent of a child with CF initially to join the Committee for a five-year term. We are excited to announce we actually chose two Community Voice members below who will join one adult with CF on the PPC. We celebrate the expanded community representation on the Committee and thank the two new members for sharing their time and expertise!
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Celebrations in the Month of March
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Women's History Month
We are proud to recognize March as Women’s History Month. We invite you to use the month to celebrate the many contributions and achievements of women, past and present, who have made an impact in various facets of our lives including our families, community, and society. Join us in using this observance month to celebrate the resiliency of the CF community and build a more inclusive community together.
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Over the coming weeks, Community Voice will share opportunities to participate in projects related to sexual and reproductive health, joining the CF Foundation’s Adult Advisory Committee, and more!
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Sharing Insights & Experiences Through the CF Community Blog
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Check out these recent blog posts by Community Voice members! Community Voice currently has 197 members who have written 434 posts since the CF Community Blog launched.
Interested in sharing your story? The CF Community Blog wants to hear from you.
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