“Find ways to work parenting into cystic fibrosis”: A PhotoVoice exploration of being a parent and having CF

Abstract

Background As more people with cystic fibrosis (CF) consider their reproductive futures, the impact of parenthood on CF must be better understood. In the context of chronic disease, deciding if, when, and how to become a parent is complex. Little research has investigated how parents with CF balance their role as parents with its associated health impacts and demands of CF. Methods PhotoVoice is a research methodology that utilizes photography to generate discussion about community issues. We recruited parents with CF with at least 1 child <10 years old and divided them into three cohorts. Each cohort met five times. Cohorts developed photography prompts, took photographs between sessions, and reflected on the photos at subsequent meetings. At the final meeting, participants selected 2−3 pictures, wrote captions, and as a group organized the photographs into thematic groups. Secondary thematic analysis identified metathemes. Results Participants (n = 18) generated a total of 202 photographs. Each cohort identified 3−4 themes (n = 10) which secondary analysis grouped into 3 metathemes: (1) It is important for parents with CF to pay attention to the joyful aspects of parenting and to cultivate positive experiences; (2) Parenting with CF requires balancing your own needs with those of your child, and creativity and flexibility can be key; (3) Parenting with CF consists of competing priorities and expectations often with no clear “correct” choice. Conclusions Parents with CF identified unique challenges to their existence as both parents and patients as well as ways in which parenting has enhanced their lives.

The modern landscape of fertility, pregnancy, and parenthood in people with cystic fibrosis

“…More recent qualitative evaluations into the lived experience of parents with cystic fibrosis have been conducted in the era of HEMT. A PhotoVoice exploration sought to understand how parents with cystic fibrosis cope with and balance the competing aspects of parenthood and cystic fibrosis [58 ▪ ]. Using photography to generate discussion, participants shared the importance to pay attention to the joyful aspects of parenting, balance personal health needs with those of children using creative and flexible strategies, and finding ways to deal with the uncertainty of parenthood with cystic fibrosis with known competing priorities and expectations.…”