Pursuing parenthood with cystic fibrosis: Reproductive health and parenting concerns in individuals with cystic fibrosis

Abstract

Background As life expectancy for cystic fibrosis (CF) has increased in recent decades, more individuals with CF are becoming parents. The objectives of this study were to describe the parenting and reproductive health concerns of individuals with CF and to identify the psychosocial and educational needs related to parenthood with CF. Methods Twenty adults with CF, including parents and non‐parents, participated in one‐on‐one, semi‐structured interviews about reproductive health and parenting. Questions pertained to reproductive health knowledge, psychosocial adaptation to CF related to fertility and parenthood, parenting concerns in the context of CF, and psychosocial care needs. We performed thematic content analysis on interview transcripts and descriptive statistical analysis on participant demographics and health variables. Results A majority of participants (ten women and ten men, of whom half were parents) described their health as “stable” and “good/fair”; median FEV 1 was 66% predicted (range, 30‐105). Participants shared a range of experiences related to reproductive health discussions with CF care providers and expressed concerns about pregnancy, infertility, and adoption. Parents and non‐parents expressed concerns about balancing roles as parent and patient, the impact of anticipated health decline and early mortality on children, and communication with children. Participants identified a need for earlier, improved education for potential parents and resources for parents with CF. Conclusions Individuals with CF may not receive sufficient CF‐related reproductive health education, and they have wide‐ranging concerns about the intersecting roles of patient and parent. Results from this study can provide guidance for CF care providers to improve their understanding and response to the needs of individuals and families affected by CF.

How do cystic fibrosis patients experience parenthood? A systematic review

“…A total of 2335 resources were screened with 31 resources meeting our eligibility criteria. Using the inclusion criteria presented in Figure 1, 10 articles (Barker et al, 2017; Bianco et al, 2019; Cammidge et al, 2016; Duguépéroux et al, 2006; Hailey et al, 2019; Jessup et al, 2018; Schechter et al, 2013; Ullrich et al, 2015a, 2015b, 2015c) and three abstracts were retained (Downey et al, 2015; Frankl and Hjelte, 2004; Lauritsen and Pressler, 2008).…”

“…The majority of studies were European (Barker et al, 2017; Bianco et al, 2019; Cammidge et al, 2016; Downey et al, 2015; Duguépéroux et al, 2006; Frankl and Hjelte, 2004; Lauritsen and Pressler, 2008; Ullrich et al, 2015a, 2015b, 2015c), four studies were conducted in the United Kingdom (Barker et al, 2017; Bianco et al, 2019; Cammidge et al, 2016; Downey et al, 2015), and half used qualitative designs (Barker et al, 2017; Cammidge et al, 2016; Downey et al, 2015; Hailey et al, 2019; Jessup et al, 2018). Three articles described different parts of a larger study, using the same sample (Ullrich et al, 2015a, 2015b, 2015c) or a portion of the larger sample (Ullrich et al, 2015a, 2015b).…”

‘Go for it, dream big, work hard and persist’: A message to the next generation of CF leaders in recognition of International Women's Day 2020

“…Published pregnancy guidelines are 12 years old [14] and need updating, particularly in the current era of CFTR modulators [15] . Data show that even well after their pregnancy is over, women with CF experience stresses relating to juggling their own needs and those of their children and required more clinic visits and courses of IV antibiotics when compared to matched controls, highlighting impacts on their physical and mental health of caring for small children [16,17] . Later in life, multiple studies on gender-based differences in health have reported poorer outcomes for females with CF [1,6,8] .…”

Adult Care in Cystic Fibrosis

“…The physiological challenges of pregnancy are also significant, and the risks, particularly in those with impaired lung function, should be fully discussed and explored, when possible, before embarking on pregnancy. 134,135 The subsequent challenges of raising a family. In addition, CF treatment programs usually require significant help from partners, parents, and other carers.…”

“…In the event of the partner being a carrier of CFTR mutation, preimplantation diagnosis is possible if the couple wishes to avoid having a child with CF. 134,135 Several women have had successful pregnancies while on treatment with CFTR modulators, with no reports of fetal abnormalities so far. 137…”