The experience of men and women with cystic fibrosis who have become a parent: A qualitative study

Abstract

These findings can inform health professionals to support the adaptive work necessary for families that include members with cystic fibrosis. A contemporary understanding of this phenomenon is necessary for facilitating clinically relevant communication.

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).…”

“…Nearly all the qualitative studies used single semi-structured interviews lasting 30–120 minutes, conducted in the patients’ home, clinics, or by telephone (Barker et al, 2017; Cammidge et al, 2016; Hailey et al, 2019; Jessup et al, 2018). Interviews were transcribed and analysed through different thematic approaches: interpretative phenomenological analysis (Barker et al, 2017), grounded theory (Cammidge et al, 2016), phenomenological approach of Van Manen (Jessup et al, 2018), and thematic analysis (Hailey et al, 2019). While one study conducted several interviews, they were not analysed (Downey et al, 2015).…”

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

“…6,12,14,15 The only known study on CF-related reproductive health education including men suggests that deficiencies also exist in education from CF care teams on these topics. 13 The few published studies related to parenting with CF have demonstrated that individuals with CF face conflicting recommendations from CF providers, [16][17][18] difficulty balancing responsibilities, 17,18 shifting priorities, [17][18][19] coping with parental stress in the context of illness, 18,20 and guilt about the impact of illness on children. 18,19 Within the extant literature, few published studies address male reproductive health and parenting concerns, and even fewer address individuals' decision-making with respect to parenthood.…”

“…13 The few published studies related to parenting with CF have demonstrated that individuals with CF face conflicting recommendations from CF providers, [16][17][18] difficulty balancing responsibilities, 17,18 shifting priorities, [17][18][19] coping with parental stress in the context of illness, 18,20 and guilt about the impact of illness on children. 18,19 Within the extant literature, few published studies address male reproductive health and parenting concerns, and even fewer address individuals' decision-making with respect to parenthood. To address these gaps, the objectives of this study were to describe the parenting and reproductive health concerns of parents and nonparents with CF, including men and women, and to identify the psychosocial and educational needs of individuals with CF who are considering parenthood or are parents.…”