Nichola Rumsey

Body image and disfigurement: issues and interventions.

Whether present at birth, congenital or acquired later in life, a visible disfigurement can have a profound psychological impact upon the individual concerned. Difficulties include adverse effects on body image, quality of life, and self-esteem. In addition, social encounters can present many challenges, however many individuals adapt to the demands placed upon them and appear relatively unaffected by their visible difference. This article reviews current literature exploring the psychosocial implications of living with a visible difference and considers the complex influence of physical, cultural, and psychosocial factors on adjustment. Attempts that have been made to theorise individuals experiences, relevant interventions and care provision are then examined and the challenges facing researchers in this area are outlined.

The psychological effect of mastectomy with or without breast reconstruction: A prospective, multicenter study

&NA; A multicenter, prospective study (n = 103) examined the psychological implications of womens decisions for or against breast reconstruction. Recognized measures of anxiety, depression, body image, and quality of life were completed before the operation, and 6 and 12 months later. A reduction in psychological distress over the year following the operation was evident in each surgical group (mastectomy alone or immediate or delayed reconstruction). indicating that reconstructive surgery can offer psychological benefits to some women: however, others report improved psychological functioning without this surgical procedure. In contrast to existing retrospective research, the prospective design enabled the process of adjustment during the first year after the operation to be examined. The results indicate that breast reconstruction is not a universal panacea for the emotional and psychological consequences of mastectomy. Women still reported feeling conscious of altered body image 1 year postoperatively, regardless of whether or not they had elected breast reconstruction. Health professionals should be careful of assuming that breast reconstruction necessarily confers psychological benefits compared with mastectomy alone.

Doing Synchronous Online Focus Groups With Young People Methodological Reflections

Although online focus groups are emerging as a worthwhile methodological approach for qualitative researchers, reporting has been constrained in several ways. The majority of studies report asynchronous groups, whereas others employ synchronous exchanges, the efficacy of which with young people has seldom been explored. Considering the popularity of the Internet as a communication tool for young people, this missed opportunity is surprising. Based on a series of synchronous online focus groups with young people, the authors explore why this approach might be an effective way of engaging young people with appearance-related concerns in research. In this article, they discuss the process of hosting and moderating synchronous online focus groups, highlighting some of the ethical, pragmatic, and personal challenges that might face researchers using this method. Through a reflexive approach, they intend to inform and encourage qualitative researchers to consider alternative ways of engaging young people in research.

The Eurocleft Study: Intercenter Study of Treatment Outcome in Patients With Complete Cleft Lip and Palate. Part 4: Relationship Among Treatment Outcome, Patient/Parent Satisfaction, and the Burden of Care

Objective To assess patient/parent satisfaction with the treatment they had received from their respective teams, and to explore interrelationships between satisfaction, objectively rated outcome, and the burden of care. Design This study reports cross-sectional data as part of the overall longitudinal cohort study reported in the other four papers of this series. Setting Multidisciplinary cleft services in Northern Europe. Subjects 127 consecutively treated 17-year-olds with repaired complete unilateral cleft lip and palate and their parents. Main Outcome Measure Patient/parent satisfaction. Results Generally, there was a high level of patient/parent satisfaction. There were no relationships among satisfaction, objectively rated outcomes, and the amount of care. Conclusions This study highlights various challenges involved in questionnaire surveys into patient/parent satisfaction, and underlines the need for collective efforts to improve our understanding of this issue.

Visible difference amongst children and adolescents: Issues and interventions

Whether present at birth or acquired later in life, a visible difference (disfigurement) can have considerable psychological ramifications for children and adolescents. Whilst many young people adapt to the demands placed upon them and appear relatively unaffected, others report difficulties including adverse effects on body image, quality of life, self-esteem and difficulty with social encounters. This review examines the issues experienced by those affected, summarizes the factors identified as exacerbating or ameliorating any difficulties, then considers the particular pressures associated with developmental stages and the issues for family members. The current provision of care, the potential benefit of psychosocial interventions and the challenges faced by researchers in this area are explored.

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.

Measuring the quality of life of youth with facial differences.

Objective: To describe the Facial Differences Module of the Youth Quality of Life Instruments (YQOL-FD) and present results evaluating domain structure, internal consistency, reproducibility, validity, and respondent burden. Design: A multisite observational study of youth aged 11 to 18 years with acquired or congenital facial differences. Participants: Three hundred seven youth recruited through clinics at four U.S. sites and one U.K. site. Eligible youth were aged 11 to 18 years, had a noticeable facial difference, could read at the fifth-grade level, and, for youth with facial burns, were at least 2 years posttrauma. Measures: Included were the newly developed YQOL-FD, the generic Youth Quality of Life Instrument, the Childrens Depression Inventory, and demographics. Results: Principal components analysis showed five significant factors that closely matched the domain structure hypothesized a priori. Domain scores of the YQOL-FD showed acceptable internal consistency and reproducibility. Scores were more strongly correlated with the Childrens Depression Inventory score than with self-rating of health as predicted. All domain scores showed adequate discrimination among levels of general quality of life (Wilks λ = 0.84, p = .001). The median time to complete the module was 10 minutes. Discussion: The YQOL Facial Differences Module augmented information obtained from the generic YQOL measure by addressing specific concerns. The module was well received by youth and showed acceptable measurement properties for evaluating the perceived quality-of-life status of youth facial differences. Future use in longitudinal studies and clinical trials is anticipated to evaluate the ability to detect change.

Ignoring It Doesn't Make It Stop: Adolescents, Appearance, and Bullying

Objective To investigate levels of appearance-related concern in a normative population of adolescents. Design Action research methodology was used to help adolescents develop a questionnaire that elicited peer views on appearance (Part 1) and to further develop the Changing Faces psychosocial strategies for dealing with appearance-related bullying (Part 2). Participants Adolescents aged 11–19.5 years were involved in the development of a questionnaire on the extent and nature of appearance-related concerns: 36 in development of antibullying strategies and 210 in an intervention. Intervention Part 3 of the project was an intervention that included information on the importance of appearance in human interactions as well as learning and practicing eight nonconfrontational coping strategies. Main Outcome Measures The questionnaires developed by the adolescents, in addition to Rosenbergs Self-Esteem Questionnaire for Adolescents, were used preintervention, postintervention, and at 6 months postintervention. Results Of 11–13 year olds questioned, 75% cited teasing or bullying about their appearance as causing considerable distress. Concerns were compounded by a perceived lack of effective coping strategies. At 6 months postintervention, perceived levels of bullying had decreased by almost two-thirds, and there were significant improvements in global self-esteem, confidence to tackle teasing and bullying, and confidence with disfigurement issues. A nonintervention comparison group showed no such improvements. Conclusions Offering young people social skills to cope with teasing or bullying about appearance may substantially reduce general bullying as well as that specifically targeted at disfigured individuals. Involving young people in the design of an intervention to be used with them may be crucial to the interventions eventual success, and strategies learned to cope with appearance-related bullying are easily adaptable for use in other types of confrontation.

Quality of life and psychosocial adjustment to burn injury: Social functioning, body image, and health policy perspectives

This paper reviews four major topics related to the long-term psychosocial rehabilitation for burn survivors; (1) Body image adjustment process; (2) Social functioning challenges; (3) Interventions designed to address psychosocial rehabilitation challenges; and (4) Current policy developments in the USA and the UK that focus on raising the rehabilitation standards for psychosocial care for burn survivors. While acknowledging the close relationship between body image distress and social functioning, these two areas are reviewed separately with the goal of addressing two specific questions. First, what does current empirical research and clinical experience teach us about each of these areas, and second, what are the most important gaps in current knowledge about body image and social functioning, respectively? The final section of the paper specifically addresses the question of what can be done, from a practical and a health policy perspective, to ensure that existing body image and social difficulties are appropriately addressed.