(310) A Photovoice Exploration Of Parenthood Among People With Cystic Fibrosis

Background: As people with cystic fibrosis (CF) live longer and healthier lives, an increasing number are considering or pursuing parenthood. Because little is known about the experience of parenting as a person with CF, we sought to qualitatively assess the realities of parenthood in the context of having CF.

Methods: PhotoVoice is a participatory research methodology developed to explore and disseminate the experiences of overlooked or marginalized populations. Using this technique, we recruited eighteen people with CF with at least one child under 10 years of age and divided them into 3 groups. Each group met 5 times. At each meeting, participants decided what topic they wanted to explore for the next meeting. Between meetings individuals took photographs related to that topic, and then presented and discussed their photographs with the group at the subsequent meeting. At the final meeting, participants reviewed all photographs from the group and identified key themes. Each group sorted photographs into themes, and each participant wrote captions to accompany their photographs. A trained facilitator guided participant meetings; however, thematic analysis of each group was led by participants. The study team inductively coded the meeting transcripts to discover intergroup themes.

Results: Eleven women and seven men participated in the study. Participants had 1-4 children with paths to parenthood including pregnancy, gestational surrogacy, sperm donor, and sperm extraction. Group one’s themes were 1) Joy; 2) Juxtaposition of emotions- “It’s not just happy and sad. It’s worried, it’s guilt, it’s happiness to be with your child”; 3) Striving for Balance- “Juggling multiple balls and sometimes dropping one”; and 4) Uncertainty. Group two’s themes were 1) Prioritizing your own health; 2) Resiliency; 3) Multitasking- “Parenting with CF might look different” (Image 1). Group three’s themes were 1) Prioritize your own health despite what society tells you; 2) Take breaks and vacations to enjoy life and don’t be afraid to rely on support networks; 3) Combining CF care with spending time with your child can normalize it and make it easier to fit in (Figures 1 and 2: Participant photographs with captions). Coders noted overlap on several themes, including prioritizing one’s own health, the need to multitask and adapt to balance CF care and parenthood responsibilities, and the importance of having fun with your children. Participants in all groups discussed ways in which their CF care team can facilitate and support them as parents and patients, including assistance with streamlining their daily CF routine, emphasizing the role of personal health in being a good parent, and providing support and resources during the postpartum/infancy periods.

Conclusions: People with CF face unique challenges as parents. This study is the first to employ the PhotoVoice methodology in CF; results can guide the development of resources and strategies to support the health of the expanding population of parents with CF.

Acknowledgements: This work was supported by the Cystic Fibrosis Foundation [KAZMER20A0].

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