Community Voice: Monthly Results Update
April 2023 Edition
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Dear Community Voice Member,
Welcome to the April 2023 edition of the Monthly Results Updates!
In these digests, you will learn about the impact Community Voice members are making through participation in recent opportunities. A friendly reminder that projects undergo our vetting process to ensure they have a positive, clear impact on the CF community and aim to engage as many diverse voices as possible. While some projects may take time to provide results or an outcome, they are always shared here. If you would like to read about past projects, browse previous editions.
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Sexual Reproductive Health Prioritization Survey
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The Sexual Health, Reproduction and Gender Research (SHARING) Working Group designed a short survey for the CF community in order to better understand priorities for research in the sexual and reproductive health space. The survey was sent through Community Voice and CF care centers. We received 303 responses from people with CF and care givers. We received responses from 167 women and 86 men with CF along with 19 women and 33 men who are caregivers or loved ones of someone with CF. Survey participants were asked to select their top 5 research priorities and rank priorities from a list provided. Survey results were evaluated by 1) person with CF versus caregiver, 2) by men versus women and 3) modulator use versus no modulator use. Results varied based on how the data was broken down by population, but overall respondents ranked their top sexual and reproductive health priorities to be questions surrounding:
(1) Fertility
(2) Effects of Trikafta on sex hormones
(3) Effects of sex hormones on CF
(4) Pregnancy
(5) Assisted reproductive technology
The SHARING and men’s health working groups supported by the CF Foundation aim to use these community survey results to guide prioritization and design of upcoming studies. Thank you to everyone who took the time to complete the survey, and to the members of the SHARING Working Group who helped develop the study.
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Community Attitudes on Clinic Discussions about Challenges Paying for the Things Needed to Manage CF
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In February 2023, the CF Foundation’s Health System Innovation & Navigation (HSIN) team conducted interviews with sixteen adults with CF and parents/caregivers of children and adults with CF to gather insights on the challenges of rising costs for the things needed to manage living with CF. These challenges included food insecurity, transportation challenges, housing challenges, and other social needs. The interviews were used to better understand personal comfort levels discussing these challenges with CF care teams and the type of support interviewees would ideally want from their CF care team.
Through these interviews, the team learned about barriers people with CF and caregivers face when it comes to talking about non-medical factors with CF clinicians, as well as examples of positive interactions. Among the themes identified in analysis, the importance of partnership and trust stood out.
This project will inform future work within HSIN and help increase awareness. As one example, findings were submitted in an abstract for the 2023 North American CF Conference. The HSIN team is incredibly grateful and would like to thank everyone who shared their experiences and perspectives on this project!
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Medical Traumatic Stress Interviews
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In 2021, researchers from the University of California, San Francisco conducted a series of interviews to understand the kinds of events that cause medical traumatic stress in CF, what symptoms people with CF have from these events, and the impact of these events on their everyday lives. Through these interviews, they gained a deeper understanding of the characteristics of medical events that are perceived to be traumatic, the specific kinds of traumatic stress symptoms that people with CF experience, and multitude of ways that these symptoms impact patients with CF. This information is setting the foundation for the next step of the project, which is to develop a self-report medical traumatic stress exposure and symptom scale. The research team is deeply appreciative of every person who participated and looks forward to future collaborations with Community Voice members as we move on to the next steps in this project.
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Celebrations in the Month of May
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CF Awareness Month
Every May, the CF community comes together to educate others about the disease, share unique experiences and personal stories, and unite behind our mission to find a cure for all people with CF. In 2023, the campaign theme is “Unity in Community,” which highlights the strength in coming together to fight CF as a joint community. Use the hashtag #CFAwarenessMonth to view shared stories throughout the month. Want to get more involved? Visit our resource page!
Asian American, Native Hawaiian, and Pacific Islander Month
Next month, Community Voice is proud to recognize Asian American, Native Hawaiian, and Pacific Islander (AANHPI) Heritage Month throughout May. Join us in celebrating the contributions, achievements, and diversity of the AANHPI CF community by exploring resources that foster deeper learning and reflection on the experiences of those in the AANHPI community.
Mental Health Awareness Month
Mental Health Awareness Month highlights the importance of mental health while simultaneously destigmatizing the topic. Mental health is an important aspect of peoples’ lives that includes emotional, psychological, and social well-being which is experienced through all stages of life.
If you are interested in sharing your story, please fill out the CF Community Blog interest form!
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UPCOMING & OPEN OPPORTUNITIES
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Keep an eye out for upcoming opportunities in the next few weeks to share your perspectives and experiences on topics such as nutritional habits in infants and children, SDOH and financial wellness, medical traumatic stress, and more. In the meantime, check out open opportunities to participate in today!
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