Community Voice: Monthly Results Update
July 2024 Edition
|
|
|
Dear Community Voice Member,
Welcome to the July 2024 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 excited to highlight sexual and reproductive health projects that Community Voice members have made significant contributions to in recent months, including:
- Interviews on reproductive genetic counseling
-
Community input on an online decision-making tool for adolescents and young adults with CF
- Prioritizing topics related to male sexual reproductive health
- Updates to the CF Sexual and Reproductive Health (CFReSHC) Guide, including a chance to get involved
All Community Voice 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.
|
|
|
TOPIC SPOTLIGHT: SEXUAL REPRODUCTIVE HEALTH
|
|
|
We are excited to share several updates on the contributions that Community Voice members have made in recent months to a greater understanding of sexual and reproductive health, as it relates to the lived experiences and priorities of people with CF. Community input has been key in shaping current and future research, and there will continue to be opportunities to share your perspectives on sexual and reproductive health. Read on to find out what researchers have learned from Community Voice members and how you can get involved!
|
|
|
Reproductive Genetic Counseling Interviews
|
Recent studies have shown that more people with CF are thinking about becoming parents, with a range of genetic testing options available for them and their reproductive partners. Researchers at the University of Pittsburgh individually interviewed 21 members of Community Voice in late 2023 to better understand how genetics affects their decision-making about becoming parents and their perspectives on genetic counseling and testing. Researchers learned that:
- People with CF have a wide range of views on how genetics influenced their decisions to become parents.
- Participants understood the role of genetic counselors and believed that knowledge from genetic testing was important. However, these services seem to be underutilized, as only half had previously met with a genetic counselor.
-
People with CF believe genetics information (including recessive inheritance, personal mutations, and modulator eligibility) should be shared with them during childhood or adolescence and reinforced when they express an interest in family planning.
The findings show the importance of a personalized approach to offering genetic testing and providing genetic counseling services to people with CF and will support future work to better integrate genetic counseling for all people with CF into their care teams.
|
|
|
“I’m so grateful for all of our participants for taking the time to speak with me and share their thoughts and experiences. I learned so much from listening to everyone’s stories, especially how different everyone’s personal experiences with CF and decisions surrounding becoming a parent are. Thank you so much to the 21 Community Voice members who participated in this study. I sincerely hope studies like this will contribute to improving sexual and reproductive health care services for the CF community.”
|
|
|
– Gopika Rajanikanth, University of Pittsburgh
|
|
|
Decision-Making Tool for Female Sexual & Reproductive Health
|
|
|
In 2023, six members of Community Voice participated in interviews with researchers at the University of Pittsburgh to provide feedback on “MyVoice,” an online decision-making tool related to female sexual and reproductive health for adolescents and young adults with CF. Key themes that emerged include:
- Adolescents and young adults with CF are considering their reproductive health and are curious how modulators may impact it.
-
Participants want more information on puberty, healthy relationships, self-advocacy, and anecdotes from peers.
- Parent-child relationships and open communication on sexual and reproductive health are important and can be supplemented with the MyVoice online tool.
Additional results will be presented at the 2024 North American Cystic Fibrosis Conference (NACFC) and shared with Community Voice later this year. The feedback will also be used to help shape future resources, including an updated version of MyVoice.
|
|
|
Male Sexual and Reproductive Health Topic Prioritization
|
|
|
Community Voice members participated in online activities in early 2024 and a follow-up discussion in June to identify priority topics related to male sexual and reproductive health and CF. More than 80 people participated in the online brainstorming activity, which helped identify the following as priority topics for future research in this space:
- Family building and fertility
-
Psychosocial aspects of sexual and reproductive health
- Being a parent or partner as a male with CF
- Sexual development, function, and treatments
- Education, communication, and awareness
- Risks, aging, and the presence of other medical conditions (comorbidities)
The discussion also highlighted CF community interest in knowing more about male sexual and reproductive health related to CF, and the value of increasing the quality and frequency of patient-provider discussions on these topics to support shared decision-making in CF care settings. These findings will continue to be used to shape content for future educational patient resources and areas of study related to sexual and reproductive health for males with CF.
|
|
|
CF Sexual and Reproductive Health Guide Updates - Get Involved!
|
|
|
Five Community Voice members supported updates to the CF Sexual and Reproductive Health (CFReSHC) Guide related to mental health and modulators. The updated guide will be launched soon and shared with Community Voice in an upcoming monthly results update.
Want to get involved? CFReSHC will be updating additional chapters with information on how modulators and mental health intersect with various sexual and reproductive health topics. People with CF who are members of Community Voice will be invited to apply in early August – watch your inbox or contact us at CommunityVoice@cff.org for more information!
|
|
|
Keep an eye out for upcoming opportunities in the next few weeks to share your perspectives and experiences by:
- Writing new and updated content for the CF Sexual and Reproductive Health (CFReSHC) Guide, including chapters on bone health and heart health;
-
Joining a CF Foundation lung transplant advisory group;
- Providing input on CF Foundation newborn screening guidelines, and more!
|
|
|
Sign up for Research and Care Updates
Do you want to stay updated on the latest advancements in CF treatments and care? Sign up for the Research and Care Update Email, which is sent out every two months. The emails cover the latest Foundation-funded CF research, provide important updates that affect medical care for people with CF, and offer ways for the CF community to provide feedback on both topics. To sign up for these emails, visit our website, and select “Research and Care” under “interests.” The latest edition went out on June 11. The Research and Care email is also available in Spanish.
Small Group Discussions: Life After Modulators and Young Adult Financial Wellness
Join others, including adults with CF and parents of children with CF, for small group discussions to connect and share with others about two different topics. The discussions will be 75-minute community support sessions, peer-led with CF Foundation staff present to assist with technology. Please contact Kelsey Logan with any questions about these discussions.
Life After Modulators: August 13 at 7:00 p.m., ET
Most people with CF have relied on a strict schedule of treatments and medications to sustain their lives. What happens when those needs change? Join others whose lives have drastically changed after starting a CFTR modulator to discuss your evolving identity, hopes, plans, and needs for the future.
|
|
|
Costs of Life with CF: Financial Wellness Discussion for Young Adults: August 27 at 7:00 p.m., ET
Are you a young adult with CF beginning to transition away from your parent's insurance and financial support? Are you a caregiver supporting someone in this situation? Interested in connecting with others going through something similar? Join an upcoming small group discussion to build community, exchange experiences, and support each other in navigating your financial wellness. This group is for people with CF age 18-26; parents and caregivers of young adults with CF are also welcome to attend and will have their own breakout discussion.
|
|
|
Sharing Insights & Experiences Through the CF Community Blog
|
Check out this recent blog post by a Community Voice member! Community Voice currently has 188 members who have written 417 posts since the CF Community Blog launched.
Interested in sharing your story? The CF Community Blog wants to hear from you.
|
|
|
4550 Montgomery Ave Suite 1100 N | Bethesda, MD 20814 US
|
Manage your preferences
Opt Out of this mailing list | Opt out of all CF Foundation emails
Got this as a forward? Sign up to receive our future emails.
View this email online.
|
This email was sent to .
To continue receiving our emails, add us to your address book.
|
|
|
|
