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

Abstract

AbstractBackgroundAs 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.MethodsPhotoVoice 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.ResultsParticipants (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.ConclusionsParents with CF identified unique challenges to their existence as both parents and patients as well as ways in which parenting has enhanced their lives.