A qualitative exploration of parenthood experiences and needs among people with cystic fibrosis.

BACKGROUND

As highly effective modulator therapy improves the lives of many people with cystic fibrosis (pwCF), more are considering or pursuing parenthood. This study explores the interplay between having CF and being a parent.

METHODS

We recruited pwCF with >1 child ≤10 years from CF Foundation Community Voice and participating CF centers to complete interviews exploring their decision-making process to become a parent, adjustment to parenthood with CF, the impact of CF on parenting, and the impact of parenting on CF care/adherence. We transcribed and thematically analyzed interviews using a deductive approach.

RESULTS

Twenty-one mothers and 16 fathers participated (age 22-46 years). Key themes included: 1) The responsibilities of parenthood and the responsibilities of CF care often conflict, requiring creative multitasking and alterations to other aspects of life; 2) Delegating tasks to partners/family can alleviate conflicts between parenting and CF care; 3) While CF teams do not play a major role in decisions to become a parent, pwCF desire support/resources specific to parenting from their CF team; 4) It is logistically and emotionally difficult to avoid illnesses transmitted from children, but some parents use precautions to mitigate risk; and 5) Parents with CF desire clinic-facilitated connections with other parents with CF to share strategies and for emotional support.

CONCLUSIONS

Parents with CF have unique challenges both as pwCF and as parents, and the intersection of these roles can impact their health outcomes and care adherence. Identifying common challenges may allow CF care teams to improve support of parents with CF.