The living experiences of adults born with a cleft lip and/or palate

Abstract

Section A
Background and aims. Cleft lip and/or palate are common congenital craniofacial conditions which can impact speech and appearance. Individuals with cleft often endure bullying and interpersonal challenges in early life, but existing reviews of the impact of cleft attempt to cover multiple domains of lifespan life satisfaction, leaving it unclear what the potential social impact may be on adults.

Method. A systematic search of CINAHL, APA PsycInfo and MEDLINE databases was conducted. Screening and quality appraisal followed, and a thematic synthesis was conducted to identify descriptive and analytical themes.

Results. Thirteen studies were included in the review and seven analytical themes were identified: 1) Constructing a view of oneself as an ‘outsider;’ 2) a sense of belonging in a social world; 3) meaning attributed to unique adult relationships, 4) passing on my experiences; 5) developing social survival strategies; 6) operations of power and 7) self-perception as intrinsically enveloped in social life.

Conclusion. Whilst many adults with cleft will develop mechanisms for living in a social world, difficulties remain for some. Elements of socialising can bring about painful past memories and present realities surrounding the extent to which one belongs which should be considered
by psychologists working within cleft teams.

Section B
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.

Participants. Fourteen women born with cleft aged 20-72 living in the US or UK.

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.

Results. Six overarching narratives were identified, 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.

Date of Award	2025
Original language	English