Community Voice: Monthly Results Update
April 2022 Edition
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Dear Community Voice Member,
Welcome to the April 2022 edition of Monthly Results Updates!
In these digests you will learn about the impact Community Voice is having through members participation in recent opportunities. If you’d like to read about past projects, browse previous editions.
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Communities of Color Focus Group Report
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Last year, the Cystic Fibrosis Foundation conducted focus groups with people of color in the CF community to better understand barriers to engagement, care, and research. This listening effort provided critical feedback and insight on experiences of people of color in the CF community, and will help improve engagement efforts, create safe and inclusive spaces, and inform the ongoing work of the CF Foundation's Racial Justice Working Group. Thank you to those who shared their stories and valuable insights, which have been included in this comprehensive report. As we focus on sharing these findings across the CF community as widely as possible, it is our goal that this report will serve as a catalyst for ongoing conversations in the community, care centers, academia, and amongst ourselves about what it means to truly live with CF.
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Food Insecurity Interviews - Update
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With food insecurity affecting about one-third of the CF community, researchers from the UPMC Children’s Hospital of Pittsburgh conducted phone interviews with 6 adults with CF and 14 parents of children with CF in Community Voice to learn more about their experiences and challenges regarding food access or affordability. Several themes were identified, including that:
- Food insecurity in the CF community is influenced by a variety of factors, ranging from the nutritional demands to competing financial barriers
- Food insecurity can impact CF health outcomes
- Both open patient provider communication and comprehensive resources are vital
- Screenings and discussions around food insecurity should be normalized in CF care
The research team developed a journal manuscript which has been submitted for publication. Thank you to everyone who participated in an interview!
Open Opportunity: As part of a separate study, the CF Foundation’s Food Security Committee is also recruiting up to 24 adults with CF or caregivers who have experienced challenges with basic needs (such as food, housing, utilities, transportation, employment, and other social risk factors), to participate in a 30-45-minute interview to better understand these challenges. Learn more about this opportunity and email Dr. Oates at goates@uabmc.edu to schedule an interview by Friday, May 13. Participants will receive a $50 gift card for their time.
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As people with CF live longer and healthier lives, an increasing number are considering or actively pursuing parenthood. Because little is known about the experiences of parenting as a person with CF, researchers from the University of Pittsburgh conducted two studies with Community Voice members to better understand the realities and impact of parenthood among adults with CF.
In the photography-based study, 18 parents with CF were organized into groups to discuss various topics they wanted to explore related to parenthood and CF. Between meetings, participants also captured photographs related to raised topics and sorted them into thematic groups. Several themes emerged from the study, including:
- The juxtaposition of various emotions such as joy, worry, guilt, and uncertainty
- The prioritization and balance of one’s health versus familial responsibilities
- Resiliency
- The importance of support systems
- Normalizing CF care routines with children
In the interview-based study, the researchers conducted interviews with 21 women and 14 men with CF who have at least one child under 10 years old to learn more about their experiences in becoming and being a parent and how it has impacted their CF health. Several themes were identified, including that:
- Prioritizing CF care is key to being a good parent
- Including children in CF care activities can help ease incorporation into daily schedules
- Highly effective modulator therapy has decreased daily treatment burden and increased parents’ self-perceived ability to more actively parent
- Parents with CF want care teams to acknowledge the competing interests of CF care and parenthood, and assist them in finding balance
- Parents with CF desire educational resources and peer support both when deciding if to become a parent and during parenthood
Open Opportunity: The research team is currently recruiting 6 more men with CF to participate in an anonymous, 30–50-minute phone interview. If you are interested in this opportunity, please contact Olivia Stransky at Olivia.stransky@pitt.edu. Participants will be compensated $50 for their time. After the study concludes, these findings will be published as a manuscript in a peer-reviewed journal and shared during a symposium at this year’s North American CF Conference.
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OUTREACH Study Informed Consent Form Review
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A team from Seattle Children's TDN Coordinating Center is conducting the OUTREACH study, which will compare clinic versus home spirometry results. Community Voice members have played a key role in informing this study, including participating in a meeting to shape the study’s design, sharing their perspectives and experiences about using home spirometry devices, and most recently sharing feedback on the study’s informed consent form. Thanks to feedback from seven Research Voice members, the research team incorporated several changes to the informed consent form, including adding additional detail on the procedures, modifying the ‘schedule of visits’ table, clarifying the sections about payment and participation in the CF Foundation’s Patient Registry, and overall making the entire document more user-friendly. The study will begin recruiting participants through the Clinical Trial Finder and twenty participating institutions later this fall. Thank you to everyone who has been involved throughout this project, including Jennifer Weber, Amanda King, Kevin Wohlers, Kerry Doyle-Shannon, Rebecca Preslar, and Rob Bible who participated in this review!
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Nutrition Risk Assessment Feedback
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In 2021, the nutrition team at Johns Hopkins Pediatric CF center gathered feedback from parents and caregivers of children with CF on a screening tool that would help the care team identify which patients would benefit from seeing a nutritionist during their clinic visit, as well as the proportion of patients who have a BMI consistent with overweight/obesity. Feedback from the community provided insight into the perception of nutrition risk classifications, nutrition-related concerns associated with starting modulator therapy, and the use of BMI in CF clinics. The team shared the feedback with other CF nutritionists and is using the data to create a new screening tool. Thank you to everyone who participated in this project!
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UPCOMING & OPEN OPPORTUNITIES
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National Donate Life Month
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April is National Donate Life Month, where we raise awareness about the importance of organ, eye, and tissue donation while honoring the many people who have already saved countless lives through their gift of donation. This year’s theme, “Bee A Donor," is inspired by the way bees work together to support their community and their vital role in sustaining life. Read more from Community Voice member Kasey Raffensperger about why organ donation is important to people with CF and check out the hashtags #DonateLifeMonth, #BeeADonor, and #DonateLife across social media to learn from donors, recipients, families, and caregivers about how donations have impacted their lives. A huge thank you to those who have donated, those who seek to register as a donor, and those who are helping to spread awareness!
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Keep an eye out for upcoming opportunities in the next few weeks, including ways to express interest in serving as a BreatheCon Co-chair and to share your perspectives and experiences on topics such as sexual and reproductive health for men, genetic based therapies, well-being after being on modulators, and more.
In the meantime, check out current open opportunities on topics including physical and mental health of children and adolescents, and food insecurity.
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