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

## TL;DR

This study explores how adult women with cleft lip and/or palate experience psychosocial challenges and resilience through their personal stories.

## Contribution

The study is the first to specifically explore the experiences of women with cleft using an intersectional lens.

## Key findings

- Six key themes emerged: enduring, hiding, striving, healing, reclaiming, and reconciling.
- Women's societal expectations and pressures are compounded by the ongoing impact of cleft.
- Narrative and photo elicitation methods revealed converging personal stories among participants.

## Abstract

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.

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.

Interviews took place on Microsoft Teams video call, with photos shared on-screen throughout, and lasted an average of 94 min.

Fourteen women born with cleft aged 20 to 72 living in the United States or United Kingdom took part.

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.

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.