“What I Want You to Know”: Adult Women's Stories of Cleft Lip and/or Palate

Objective Evidence suggests that cleft lip and/or palate can have significant psychosocial impacts on adults’ lives beyond the end of the standard treatment pathway. Although some studies indicate gender differences, no research has specifically explored the experiences of women with cleft. This study aimed to explore the stories told by women about their adult experiences of cleft, for discussion informed by intersectionality theory. Design Participants were interviewed using a narrative, photo elicitation approach. Each participant brought photos they felt represented their story to an unstructured interview, which was recorded and transcribed verbatim. Data were subject to narrative analysis. Setting Interviews took place on Microsoft Teams video call, with photos shared on-screen throughout, and lasted an average of 94 min. Participants Fourteen women born with cleft aged 20 to 72 living in the United States or United Kingdom took part. Results Six overarching discourses were identified and presented alongside 14 individual narrative synopses, depicting converging stories told by each participant throughout their interview. These were (1) enduring, (2) hiding, (3) striving, (4) healing, (5) reclaiming, and (6) reconciling. Conclusions Viewing cleft through an intersectional lens offers important insights into the lived and living experiences of adults navigating treatment and the ongoing psychosocial impact of cleft. The findings suggest that expectations and pressures placed on women by society are compounded by, rather than exist in parallel with, the ongoing impact of cleft.