The psychosocial impact of being a young person with an unusual appearance

Living with an unusual or different appearance as a result of a disfigurement from birth, an accident or illness can be particularly challenging for young people in today's appearance-obsessed society. Heidi Williamson explores the psychological and social experiences of adolescents with a ‘visible difference’ and considers factors that can determine how well adolescents cope with these challenges

Toward a conceptual and methodological shift in craniofacial research

© The Author(s) 2017. Objective: To date, research investigating the psychological impact of craniofacial conditions has produced variability across outcomes. The aims of this article were to summarize the challenges that may contribute to this variability, and to offer alternative perspectives and approaches to guide future research and practice. Design: A comprehensive evaluation of papers exploring adjustment to congenital craniofacial conditions was conducted. Methodological approaches and underlying conceptual issues were identified and summarized. Results: The conceptual limitations identified include inherent challenges pertaining to the multifactorial and fluctuating nature of adjustment, a lack of consensus regarding the primary constituents of a positive outcome, scant use of appropriate models and theories, and a predominant focus on “deficits” over “strengths.” The methodological shortcomings identified include a lack of representative samples, biomedical inclusion/exclusion criteria, inconsistency in measurement, a relative absence of the patient perspective, variability in approaches to data analysis and interpretation, and the failure to draw on knowledge from other disciplines and related fields of health research. Findings are believed to be relevant to all disciplines involved in craniofacial research and practice. Conclusions: Existing literature remains markedly affected by a range of conceptual and methodological challenges, despite these challenges being identified 25 years ago. The present article proposes that a shift in the way we conceptualize and study craniofacial conditions is needed, in order to construct a comprehensive understanding of adjustment to craniofacial conditions, and to address the key unanswered questions important to all stakeholders

Comparing psychological adjustment across cleft and other craniofacial conditions: Implications for outcome measurement and intervention

© 2018, American Cleft Palate-Craniofacial Association. Although cleft lip and/or palate (CL/P) has been a focus of psychological research for a number of years, investigation of adjustment to other, rarer craniofacial anomalies (CFAs) has been scarce. Yet, many features of the journey experienced by patients with CL/P could also have relevance for those affected by other CFAs and vice versa. This brief article summarizes the literature pertaining to psychological adjustment across both craniofacial groups, as represented by several prominent review articles. Similarities across the 2 patient groups in relation to key domains of psychological adjustment and corresponding factors are identified. Consequently, a standardized approach to measurement across all congenital craniofacial conditions is proposed, alongside suggestions for the potential application of similar intervention frameworks and clinical approaches

The Psychosocial Impact of Cleft in a Western Australian Cohort Across 3 Age Groups

BACKGROUND:: Management of a cleft of the lip and/or palate (CL/P) involves a multidisciplinary team approach lasting from birth to potentially postskeletal maturity. This condition is complex, with both medical and psychosocial implications that may place individuals with a cleft at higher risk of developing psychosocial problems. METHODOLOGY:: A self-administered questionnaire was completed by a sample from the Western Australian cleft population comprising 3 age groups: child (n = 100), adolescent (n = 101), and adult (n = 158). RESULTS:: Public speaking, being photographed, special relationships, and participation in school were identified as the areas most impacted by having a cleft. Hearing and speech were reported to have a higher importance than facial and dental appearance. Participants rated support given to them by their parents as the most important, with high ratings for treatment providers. For teasing, the impact of cleft was significantly higher among participants with cleft lip and palate for both the adolescent and adult age groups. There was little significant difference by gender across the variables, which suggests that males are just as likely to require support as females. CONCLUSION:: The impact of a cleft across multiple psychosocial domains needs to be recognized and addressed as part of craniofacial team care across age groups