Kristin Billaud Feragen

Adolescents with and without a facial difference: The role of friendships and social acceptance in perceptions of appearance and emotional resilience

This study investigated the role of friendships and social acceptance in self-perceptions of appearance and depressive symptoms, comparing adolescents with and without a facial difference. Adolescents with a visible cleft (n=196) were compared with adolescents with a non-visible cleft (n=93), and with a comparison group (n=1832). Boys with a visible difference reported significantly more positive perceptions of friendships and less depressive symptoms than the comparison group. These results were interpreted in the context of indicators of emotional resilience. The objective measure of facial difference did not explain levels of depressive symptoms, while subjective measures did. Subjective ratings of appearance mediated the association between social acceptance and depressive symptoms in all samples. Gender did not contribute in explaining the paths between friendships, appearance, and depressive symptoms. The associations between perceptions of social acceptance, appearance, and emotional distress, support the possible utility of strengthening social experiences in preventing and treating appearance-concerns.

Social Experience in 10-Year-Old Children Born With a Cleft: Exploring Psychosocial Resilience

Objective: The purposes of this study were to investigate self-reported social experience in 10-year-old children born with a cleft lip and/or palate and to gain a better understanding of variables implicated in psychosocial resilience. Design: Cross-sectional study of 10-year-old children from five consecutive birth cohorts, born from 1992 to 1997. Participants: A total of 268 children treated by the Oslo cleft team (Norway) participated in the study. The childrens cleft conditions included cleft lip and palate, cleft lip alveolus, cleft palate, and submucous cleft palate. Outcome Measures: Psychosocial resilience was measured with the Child Experience Questionnaire (CEQ). Other variables were obtained during a clinical interview with the child. Cognitive, emotional, and psychosocial functioning was measured with the Personality Inventory for Children (PIC). Satisfaction with appearance was assessed through the use of the Satisfaction with Appearance Scales (SWA). Informants were both children and parents. Results: Cleft types differed significantly with respect to subtype and frequency of additional difficulties. Psychosocial resilience was associated with adequate emotional functioning, high satisfaction with appearance, and a lower frequency of reported teasing. Child characteristics such as visibility of cleft, gender, and additional diagnosis did not contribute to explain psychosocial resilience. Conclusions: Results reported here emphasise the importance of assessing the childs subjective report of satisfaction with appearance and psychosocial experience.

Peer harassment and satisfaction with appearance in children with and without a facial difference

This study investigated associations between perceived peer harassment and satisfaction with appearance in the presence or absence of a facial difference. A cross-sectional sample of 661 children aged 10 or 16, with a cleft lip and/or palate, completed measures of satisfaction with appearance and peer harassment. Results indicated that the presence of a visible versus a nonvisible cleft was not associated with appearance dissatisfaction or higher levels of peer harassment for children aged 10 or for adolescent boys. Peer harassment was related to dissatisfaction with appearance in both age groups. In the adolescent group, there was an interaction between cleft visibility and gender, girls with a visible cleft being least satisfied with appearance. However, the association between cleft visibility and satisfaction with appearance was fully mediated by experiences of peer harassment. The results highlight the need to further explore the role of social interactions for subjective perceptions of appearance.

When There Is More than a Cleft: Psychological Adjustment When a Cleft Is Associated with an Additional Condition

Background In spite of studies reporting a relatively high frequency of additional conditions in children with a cleft lip and/or cleft palate (CUP), almost no research has focused on this clinically important subgroup. The objective of this study was to compare psychosocial adjustment in children with CUP with and without an additional condition. Design Cross-sectional data based on routine psychological assessments at age 10 years, with comparisons to national reference groups. Setting Centralized treatment, Norway. Participants Two hundred five children with CUP (participation rate: 80.1%) from three consecutive birth cohorts. Outcome measures The Strengths and Difficulties Questionnaire (self-report and parent report) and the Child Experience Questionnaire (self-report). Results Eighty-one children (39.5%) were identified as having at least one condition in addition to the cleft. These children reported significantly more psychosocial difficulties than children with a cleft alone. Differences between specific conditions were minor. Children with a cleft alone (n = 124) reported mean scores that were comparable to those reported by the reference group. There were no differences in adjustment between children with a visible versus a non-visible cleft. Conclusions The present study highlights the need for research to be conducted in children with CUP who have additional conditions to provide better knowledge and clinical care for a potentially vulnerable subgroup of children and their parents.

“It Doesn't All Just Stop at 18”: Psychological Adjustment and Support Needs of Adults Born With Cleft Lip and/or Palate

Background Cleft in the lip and/or the palate (CL/P) is considered to be a lifelong condition, yet relatively little is known about the long-term outcomes for patients. Existing literature is largely outdated and conflicted, with an almost exclusive focus on medical aspects and deficits. Objective To explore the psychological adjustment and possible support needs of a large number of adults born with CL/P from their own perspective. Design Fifty-two individual telephone interviews eliciting qualitative data. Results Qualitative analysis identified five themes. Participants reported a range of challenges in relation to discharge from the service, additional surgery as an adult, social and romantic relationships, higher education, vocational achievement, and access to psychological support. The findings imply that most adults with a cleft adjust well to these challenges and report many positive outcomes. For a minority of patients, issues attributed to the cleft may continue to cause distress in adulthood. Conclusions Adults with CL/P may require psychological support, information about the heritability of cleft, signposting and referrals from nonspecialists, support regarding further treatment, and opportunities to take part in research and activities. New issues arising in adulthood, such as entering the workplace, forming long-term relationships, and starting a family, may warrant both further investigation and additional support. Further work is needed to identify the factors that contribute to psychological distress and resilience, as well as the timing of particular points of risk and opportunity for personal growth.

Toward a Reconsideration of Inclusion and Exclusion Criteria in Cleft Lip and Palate: Implications for Psychological Research

Background This article investigates the prevalence of conditions that affect cognitive and/or psychosocial functioning in 10-year-old children born with a cleft lip and/or palate (CL/P) and explores how the presence of such additional difficulties may affect the reporting of outcomes in psychological research. Design Cross-sectional data derived from routine psychological assessments. Setting Centralized treatment, Norway. Participants Data on cleft type and additional conditions were collected for 754 children with CL/P from 11 consecutive birth cohorts. Data on psychological adjustment were collected for three consecutive birth cohorts (n = 169). Main Outcome Measures The Strengths and Difficulties Questionnaire (SDQ), completed by children and parents. Results A total of 240 children (32%) in the sample had an additional condition, such as developmental delay, attention deficit/hyperactivity disorder, or a specific language impairment or dyslexia. Analysis of SDQ scores using conventional exclusion criteria (approach 1) was compared with a second method (approach 2), which included all children and categorized them according to the presence or absence of additional conditions. Significant variation in profiles of psychosocial adjustment was found depending on the approach to exclusion. Conclusions The presence of additional conditions in a sample may affect results and subsequently the conclusions drawn in relation to the psychosocial adjustment of children born with CL/P. The present study emphasizes the importance of careful assessments and reporting of all associated conditions, in order to improve the understanding of the impact of a cleft and the consequences of associated conditions in this population.

Psychological adjustment to cleft lip and/or palate: A narrative review of the literature.

Objective: Adjustment to cleft lip and/or palate (CL/P) is multifaceted, involving several domains of psychological and social functioning. A substantial increase in research in this area has been evident in recent years, along with a preliminary shift in how adjustment to CL/P is conceptualised and measured. An updated and comprehensive review of the literature is needed in light of the rapidly expanding and changing field. Design: A narrative review of 148 quantitative and qualitative studies published between January 2004 and July 2015. Main outcome measures: Findings are presented according to five key domains of adjustment: Developmental Trajectory, Behaviour, Emotional Well-being, Social Experiences and Satisfaction with Appearance and Treatment. Data pertaining to General Psychological Well-being were also examined. Results: The overall impact of CL/P on psychological adjustment appears to be low. Nonetheless, the review demonstrates the complexity of findings both within and across domains, and highlights recurring methodological challenges. Conclusions: Research findings from the last decade are considered to be largely inconclusive, although some areas of emerging consensus and improvements in the approaches used were identified. Efforts to collect data from large, representative and longitudinal samples, which are comparable across studies and encompassing of the patient perspective, should be doubled.

Adults' Narratives of Growing up With a Cleft Lip and/or Palate: Factors Associated With Psychological Adjustment

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. Result 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.

Risk and Protective Factors at Age 10: Psychological Adjustment in Children With a Cleft Lip and/or Palate

Objective To explore psychological functioning in children with a cleft at age 10 from a broad perspective, including cognitive, emotional, behavioral, appearance-related, and social adjustment. High-risk groups were identified within each area of adjustment to investigate whether vulnerable children were found across domains or whether risk was limited to specific areas of adjustment. Methods Retrospective chart review from psychological assessments at age 10 (N – 845). The effects of gender, cleft visibility, and the presence of an additional condition were investigated. Results were compared with large national samples. Measures Personality Inventory for Children, Child Experience Questionnaire, Strengths and Difficulties Questionnaire, Satisfaction With Appearance scale. Result The factor affecting psychological adjustment on most domains was the presence of an associated condition in addition to the cleft. As expected, no support was found for cleft visibility as a risk factor, while there were some gender differences related to emotional difficulties and attention. Correlation analyses of risk groups pointed to an association between social experiences and emotional adjustment and between social and behavioral adjustment; whereas, dissatisfaction with appearance was not related to any other domains of risk at age 10. Conclusions The results point to the importance of early screening and assessment of children born with a cleft to identify possible associated conditions and offer adapted and appropriate treatment and care. Future research should investigate how protective factors could counteract potential risk in children with a cleft.

Scandcleft randomised trials of primary surgery for unilateral cleft lip and palate: 1. Planning and management

Abstract Background and aims: Longstanding uncertainty surrounds the selection of surgical protocols for the closure of unilateral cleft lip and palate, and randomised trials have only rarely been performed. This paper is an introduction to three randomised trials of primary surgery for children born with complete unilateral cleft lip and palate (UCLP). It presents the protocol developed for the trials in CONSORT format, and describes the management structure that was developed to achieve the long-term engagement and commitment required to complete the project. Method: Ten established national or regional cleft centres participated. Lip and soft palate closure at 3–4 months, and hard palate closure at 12 months served as a common method in each trial. Trial 1 compared this with hard palate closure at 36 months. Trial 2 compared it with lip closure at 3–4 months and hard and soft palate closure at 12 months. Trial 3 compared it with lip and hard palate closure at 3–4 months and soft palate closure at 12 months. The primary outcomes were speech and dentofacial development, with a series of perioperative and longer-term secondary outcomes. Results: Recruitment of 448 infants took place over a 9-year period, with 99.8% subsequent retention at 5 years. Conclusion: The series of reports that follow this introductory paper include comparisons at age 5 of surgical outcomes, speech outcomes, measures of dentofacial development and appearance, and parental satisfaction. The outcomes recorded and the numbers analysed for each outcome and time point are described in the series. Trial registration: ISRCTN29932826.