(311) A Qualitative Exploration of Parenthood Experiences and Needs Among People with Cystic Fibrosis

Background: The availability of highly effective cystic fibrosis transmembrane conductance regulator modulators has improved quality and quantity of life for people with CF. Therefore, a n increasing number of people with CF are considering or pursuing parenthood. Because little is known about the experience of parenting as a person with CF, we sought to explore the impact of CF on parenthood as well as the impact of parenthood on CF.

Methods: Nationally, we recruited people with CF who had at least one child under 10 years of age from CF Foundation Community Voice, the CF Research Institute, and locally at participating centers across the United States (Pittsburgh, Denver, Dallas and Baltimore) to take part in telephone interviews about parenthood. We explored participants’ decision-making process in becoming a parent, adjustment to parenthood in the context of CF, the impact of CF on parenting, and the impact of parenting on CF care and adherence.

Results: Thus far, 21 women and 14 men with CF have participated (age range 22-46 years). Twelve participants became parents through unassisted pregnancy, eleven through TESE/MESE and IVF, six through adoption, two through sperm donors, and two with the assistance of female fertility medications. Seventeen participants had one child, sixteen had two children, and two participants had three and four children, respectively.

Emerging themes include: 1) Prioritizing CF care is essential to being a good parent; 2) Including children in CF care activities can ease incorporation into daily schedules; 3) Highly effective modulator therapy has decreased daily treatment burden and increased parents’ self-perceived ability to actively parent; 4) Parents with CF want CF teams to acknowledge the competing interests of CF care and parenthood and assist them in finding balance; and 5) Parents with CF desire educational resources and peer support both when deciding whether to become a parent and during parenthood. Such resources include mental health support for people with CF, their partners, and their children and age-appropriate CF educational resources for their children.

Conclusions: Parents with CF have unique challenges both as individuals with CF and as parents. As more people with CF become parents, it is key to acknowledge the ways in which CF impacts parenthood and the ways in which parenthood impact CF care and outcomes. Identifying points of intervention will allow CF care teams to improve support to parents with CF.

Acknowledgements: This work was supported by the Cystic Fibrosis Foundation (KAZMER20A0).

References: