Adults' narratives of growing up with a cleft lip and/or palate: Factors associated with psychological adjustment

Stock, Nicola Marie; Feragen, Kristin Billaud; Rumsey, Nichola

Abstract

© Copyright 2016 American Cleft Palate-Craniofacial Association. Background: Growing up with a cleft lip and/or palate presents a number of challenges for those affected and their families. Understanding why some individuals cope well while others struggle is key to psychological research in this field. A better appreciation of the factors and processes that contribute to psychological adjustment to cleft lip and/or palate (CL/P) from the patient perspective would be of value to both researchers and clinicians. Design: Qualitative data elicited from individual interviews with 52 adults born with CL/P. Results: Inductive thematic analysis identified three main themes: "background" factors (age, gender, sexual orientation, culture, additional conditions, socioeconomic status, and adoption), "external" factors (treatment autonomy, familial coping and support, salience, public understanding, psychological input, and peer support), and "internal" psychological factors (perceptions of difference, noticeability and teasing, social confidence, internalization of beauty ideals, valence, expectations of treatment, responding to challenges, social comparisons, acceptance, faith, dispositional style, and recognition of strengths and positive growth). Conclusions: The number and breadth of factors identified in this study are testament to the importance of psychology in the field of CL/P and may offer guidance in relation to developing and assessing the value of psychological interventions. There is a clear role for psychologists in tackling appearance-related concerns, designing materials, supporting patient decision making, and improving social interaction, as well as providing specialist psychological support. The findings illustrate the potential degree of individual variation in perspectives and offer insight into the conflicting results found within current literature.

• Journal Article Type: Article
• Publication Date: Mar 1, 2016
• Deposit Date: Feb 5, 2015
• Publicly Available Date: Mar 28, 2018
• Journal: Cleft Palate-Craniofacial Journal
• Print ISSN: 1055-6656
• Electronic ISSN: 1545-1569
• Publisher: SAGE Publications
• Peer Reviewed: Peer Reviewed
• Volume: 53
• Issue: 2
• Pages: 222-239
• DOI: https://doi.org/10.1597/14-269
• Keywords: adults, cleft lip and palate, intervention, psychological adjustment, resilience, risk, visible difference
• Public URL: https://uwe-repository.worktribe.com/output/923699
• Publisher URL: http://dx.doi.org/10.1597/14-269
• Additional Information: Additional Information : © 2016. Reprinted by permission of SAGE Publications
• Contract Date: Jun 8, 2016