Emotional Well-Being in Adults Born With Cleft Lip and/or Palate: A Whole of Life Survey in the United Kingdom.

Abstract

Previous research with adults born with cleft lip and/or palate (CL/P) has identified a range of concerns regarding mental health and quality of life, concluding that overall emotional functioning is poorer compared to the general population. The aim of the current study was to build on this previous work by investigating the self-reported emotional well-being of adults born with CL/P in the United Kingdom. An online, mixed methods survey was designed by the Cleft Lip and Palate Association in collaboration with the Centre for Appearance Research at the University of the West of England. A total of 207 eligible responses were received between July and October 2018. Qualitative data were analyzed using inductive content analysis, while quantitative data were analyzed using descriptive statistics and independent t tests. Almost half of the sample reported a diagnosis of a mental health condition. Scores on standardized measures indicated significantly lower global self-worth, higher levels of fear of negative appearance evaluation, and lower self-perceived job competence compared to normative data. Scores of overall body esteem were in line with the general population. Most participants had not received psychological support from their regional CL/P team and 41% were unaware of their entitlement to treatment from the National Health Service. Individuals with CL/P may be at risk of emotional distress persisting into adulthood. The integration of routine psychological support from an early age is highly recommended, as is information for young adults about to complete routine treatment. Comprehensive psychological screening for adults returning to the service later in life is also strongly advised.