‘I’ve got to prioritise’: being a parent with cystic fibrosis

Abstract

Due to advances in earlier diagnosis and treatment, the life expectancy of a person born with cystic fibrosis (CF) has increased. Therefore, more people with CF are becoming parents but the psychological understanding of CF has lagged behind advances in medical treatment; there is very limited applied psychological research on which parents and professionals can draw when considering issues of parenting in this context. This qualitative research explored how mothers and fathers with CF experience and manage the dual roles of being a parent and living with CF. The aim was to facilitate development of an understanding of experience rather than test existing theory. A qualitative methodology was chosen as it allowed participants to reflect openly on their individual experiences. Nine participants completed semi-structured interviews either in their own homes or a clinic base which examined parenting, CF and the interaction between the two roles. Four participants were male and five were female with an age range of 21-50. Interpretive Phenomenological Analysis was used to interpret the participants' accounts and generate super-ordinate and master themes. 'Being a parent on compressed time' was the super-ordinate theme which reflected the challenge of parenting within both a limited life trajectory and a complex treatment regime with daily adherence and time pressures. The findings have implications for parents with CF, those considering parenting and for health professionals working in CF services whose guidance needs to be grounded in an evidence-base. Further research is needed to explore the experiences of parents within different family structures, parents who have had a transplant and the perspectives of others in the wider system in which parents with CF are located.

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

“…Participants in our study corroborated several concerns that were addressed in the few prior studies on parenting with CF and also raised concerns that have not been previously described. Confirming findings from Barker, Jessup, and Cammidge, participants recognized that parenting required a shift in priorities and increased preparation for the future. Parents struggled with the responsibilities of fulfilling the current and anticipated needs of their children while engaging in time‐intensive efforts to maintain their health.…”

“…Parents struggled with the responsibilities of fulfilling the current and anticipated needs of their children while engaging in time‐intensive efforts to maintain their health. As described by Barker et al, parents with CF experience their role as “being a parent on compressed time”. Parents in our study echoed this phenomenon, trying to “make the most” of their time with their children.…”

“…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.…”

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).…”

‘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] .…”