Evaluation of Facial Appearance–Related Quality of Life in Young Japanese Patients With Cleft Lip and/or Palate

Objective: (1) To confirm the reliability of a Japanese version of the Youth Quality of Life Instrument-Facial Differences Module (YQOL-FD); (2) to assess the quality of life (QoL) related to facial difference in Japanese youths with cleft lip and/or palate (CL/P) using this instrument; and (3) to examine the QoL differences according to age, sex, and cleft type. Design: A cross-sectional study. Setting: Japanese youths with CL/P were recruited through our hospital and asked to complete the YQOL-FD. Participants: Sixty-nine Japanese youths (age, 11-18 years) with CL/P. Outcome Measures: The domain scores of stigma, negative consequences, negative self-image, positive consequences, and coping in the YQOL-FD, and the reliability of such scores were evaluated. Results: The instrument showed an acceptable internal consistency (Cronbach α = 0.74-0.92) and test–retest reliability (intraclass correlation coefficient = 0.94-0.98), except for the coping domain. The individual’s domain scores were spread out from the lowest score to the high scores among all domains, thus indicating the negative and positive impacts of living with facial differences regarding their QoL may vary among individuals with CL/P. All domain scores in the 15- to 18-year-old group were significantly higher than those in 11- to 14-year-old group; there were no significant differences according to sex or cleft type. Conclusions: The instrument showed acceptable reliability, except for the coping domain. There were individual variations in QoL concerning the facial difference among Japanese youths with CL/P as measured by the YQOL-FD, suggesting the importance of individual evaluations. Perceptions were influenced by age, but not sex or cleft type.

Social Media as a Platform for Cyberbullying of Individuals With Craniofacial Anomalies: A Preliminary Survey

Purpose The primary aim of this study was to investigate the extent to which individuals with facial and/or speech differences secondary to a craniofacial anomaly experienced bullying through social media platforms during late school age and adolescence. Method Using an online survey platform, a questionnaire was distributed via several public and private social media groups designated for individuals with craniofacial anomaly and their caregivers. Results The majority of participants ( n = 38; 88.4%) indicated they had been bullied during late school-age and adolescence and that they believed this was due to their facial difference and/or speech disorder ( n = 27; 71.1%). Almost one third indicated they had been victims of cyberbullying during this time ( n = 12; 31.6%) with the most common venues being texting and Facebook. Despite the large percentage of participants who reported being bullied through social media, half ( n = 6) indicated they did not often report these instances of cyberbullying. Conclusions As social media use continues to increase, it appears inevitable that cyberbullying will occur. Particularly vulnerable to both traditional and cyberbullying are individuals with craniofacial anomalies. Because of the specialized training of speech-language pathologists, school-based speech-language pathologists are in a unique position to play a key role in school-wide antibullying efforts and to educate school personnel on ways in which to support the needs of children with craniofacial anomalies both inside and outside of the classroom.

Perceptions Regarding the Academic and Cognitive Performance of Individuals With Cleft Lip and/or Palate

Introduction: Factors such as teachers’ appropriate support and social interactions have an impact on the academic performance of children with cleft lip and/or palate (CL/P). This study was designed to investigate the perceptions of the teachers and the general public about the academic and cognitive performance of individuals with CL/P. Methods: This study was included 360 (male/female = 102/258) teachers and 640 (male/female = 259/381) participants that represent the general public. Anonymized web-based and paper-and-pencil self-administered questionnaire that included multiple-choice and yes/no questions were administered. Within-group differences and intergroup differences were analyzed in terms of academic and cognitive performance. Results: Most of the teachers and the general public indicated that the academic and cognitive performance of individuals with CL/P is the same as their unaffected peers. A significantly higher proportion of the teachers indicated that the academic performance of children with CL/P is the same as their unaffected peers than the general public. Conclusion: Considering that the general public’s attitudes and appropriate teacher support are crucial to prevent adverse impacts on the lives of individuals with CL/P, it is important to support teachers with the appropriate information and to encourage the public to recognize that everybody with a facial difference should be treated as an individual rather than a disability.

PROPORTIONATE MAIMING: THE ORIGINS OF THOMAS JEFFERSON'S PROVISIONS FOR FACIAL DISFIGUREMENT IN BILL 64

ABSTRACTIn 1779, Thomas Jefferson proposed the use of nose-cutting to punish women convicted of specific offences, and the use of retaliation (lex talionis) for anyone who deliberately disfigured another person. These punishments were intended to replace the death penalty for these crimes, and as such formed part of Jefferson's attempt to rationalise the Virginian law code in line with eighteenth-century reform principles. Jefferson drew on British laws from the Anglo-Saxon period to the Coventry Act for his bill, but his proposals contrast strikingly with British movements away from corporal marking as punishment used against their own citizens. This article examines the origins and fates of equivalent crimes and punishments in the law codes Jefferson examined, and compares the legal and wider connotations of facial appearance and disfigurement that made these proposals coherent in Virginia when they had long ceased elsewhere. Tracing examples and discussion of these intersecting cases will greatly increase our understanding of Jefferson's proposals, and the relationships between facial difference, stigma and disability in eighteenth-century America.

What to Do When People Stare: A Workshop to Teach Individuals With Disfiguring Conditions to Contend With Staring and Improve Control of Social Interactions

Facial disfigurement due to any congenital or acquired condition is a social disability that can impede communication, contribute to awkward social interactions, and cause individuals with differences to be isolated and rejected. Yet, few interventions have been developed to address the psychosocial consequences of living with a visible difference, despite research indicating that the more visible the disfigurement is to others, the greater the social implication and challenge for the affected individual. This article reviews the impact of the “What to Do When People Stare” social and communication workshop, including its theoretical basis (drawn from anthropological research and theory pertaining to disfigurement), the phenomenon of staring, and the experience of being the target of a stare. The review highlights feedback from 46 individuals with disfiguring conditions caused by burns, dermatological conditions, and craniofacial conditions who completed a Workshop Evaluation Survey. The instructor, who has a facial difference, reviewed the science of staring, the role and influence of the media and beauty in society, myths associated with disfigurement, social and communication skills, and asked specific questions to elicit feelings and beliefs about why people stare, and how it feels to be the object of a stare. After completing the workshop, 80% of participants reported that they felt better prepared to cope with staring, and 83% reported a better understanding about the motives of staring. The workshop demonstrates the need to increase awareness of visible differences and to teach individuals with visible differences and the general public appropriate social skills for engaging with one another. The workshop’s success to date highlights the need for similar programs addressing the psychosocial communicative dimensions related to staring. Collaborations with burn centers and other nonprofit organizations that treat and assist individuals with psychosocial issues related to visible difference could strengthen content and assessment data.

Decision-Making in Cleft-Related Surgery: A Qualitative Analysis of Patients and Caregivers

Objective: Preference-sensitive surgical decisions merit shared decision-making, as decision engagement can reduce decisional conflict and regret. Elective cleft-related procedures are often preference sensitive, and therefore, we sought to better understand decision-making in this population. Design: Semistructured interviews were conducted to elicit qualitative data. A hierarchical codebook was developed through an iterative process in preparation for thematic analysis. Thematic analysis was performed to examine differences between patients and caregivers. Setting: Multidisciplinary cleft clinic at a tertiary care center. Participants: Patients with cleft lip aged 8 and older (n = 31) and their caregivers (n = 31) were purposively sampled. Inability to converse in English, intellectual disability, or syndromic diagnoses resulted in exclusion. Main Outcome Measures: Preferences surrounding surgical decision-making identified during thematic analysis. Results: Mean patient age was 12.7 (standard deviation: 3.1). Most had unilateral cleft lip and palate (43.8%). Three themes emerged: Insufficient Understanding of Facial Difference and Treatment, Diversity of Surgical Indications, and Barriers to Patient Autonomy. Almost half of caregivers believed their children understood their clefts, but most of these children failed to provide information about their cleft. Although many patients and caregivers acknowledged that surgery addressed function and/or appearance, patients and caregivers exhibited differences regarding the necessity of surgery. Furthermore, a large proportion of patients believed their opinions mattered in decisions, but less than half of caregivers agreed. Conclusions: Patients with clefts desire to participate in surgical decisions but have limited understanding of their facial difference and surgical indications. Cleft surgeons must educate patients and facilitate shared decision-making.