Do congenital and acquired causes of visible difference predict distinct appearance-related psychosocial outcomes?

Having a visible difference caused by an appearance-altering condition or injury can impact psychosocial wellbeing. It remains unestablished whether the time at which a visible difference manifests, namely pre-memory (congenital) or later (acquired), predicts psychosocial outcomes associated with adjustment. In this survey study of 331 adults with visible differences, we tested whether their type, congenital (n = 161) or acquired (n = 170), would predict four key psychosocial outcomes: Appearance satisfaction, social appearance anxiety, life disengagement and intimacy distress. To account for other potential predictors and to test whether other variables would moderate any predictive effect found from the type of visible difference, the analyses also included demographic variables, visible difference characteristics and history, and interpersonal and intrapersonal factors. Four regression models were tested. With all variables entered, we found no evidence of type of visible difference as a significant predictor of any psychosocial outcome. Instead, the only consistent predictors of outcomes were optimism, social support and the extent to which participants felt able to disguise their difference. Overall, findings do not support the idea that there is a psychosocial advantage to having a congenital nor acquired visible difference, and broadly reinforce commonalities in adjusting to any cause.

Experiences and impact of the UK lockdown amongst adults who have a facial visible difference.

Globally, COVID-19 has been shown to have had a wide ranging and significant impact on individuals' daily living, and physical and mental health. However, there are some groups of individuals who may encounter unique challenges with regards to COVID-19 and whose experiences have not been investigated thus far. Therefore, this study aimed to understand the experiences of adults with a facial visible difference in relation to COVID-19 and lockdown. Semi-structured interviews were conducted with 21 adults with a variety of facial visible differences (e.g., cleft lip/palate, facial scars, skin conditions) and analyzed using inductive reflexive thematic analysis. This analysis generated three themes (Escaping the external gaze; Existing feelings manifesting in new challenges; COVID-19 taking priority). The results of this study suggest that the first U.K. lockdown from the COVID-19 pandemic created significant challenges for some individuals with a facial visible difference, and ongoing restrictions and social distancing measures might be particularly challenging for those who experience anxiety around social encounters. These findings highlight the importance of providing appropriate and accessible support for people with facial differences during lockdown and as restrictions ease.

'Your face freezes and so does your life': A qualitative exploration of adults' psychosocial experiences of living with acquired facial palsy.

OBJECTIVES: Facial palsy (FP) is a highly visible appearance-affecting condition and can have a significant impact on facial function. Qualitative research focussing on adults' experiences of living with acquired FP is limited. This study aimed to explore the psychosocial impact of acquired FP and to gain a greater understanding of patients' experiences of treatment and care in the United Kingdom. DESIGN: A qualitative interview study with individuals living with acquired FP. METHODS: Ten adults with acquired FP were recruited. Their experiences were explored using semi-structured telephone interviews. Data were analysed using thematic analysis. RESULTS: Five master themes were identified through the thematic analysis: 1) grappling with a new identity, 2) the psychosocial impact of living with facial palsy, 3) isolation: dealing with 'one hell of a problem on your own', 4) a life on hold, 5) coping strategies. Findings indicated high levels of distress and significant challenges in managing the functional and psychosocial changes associated with acquiring FP. Participants expressed grief for their former appearance and identity, with photographs and mirrors acting as agonizing reminders. Many reported a sense of abandonment due to uncoordinated care and, as a result, engaged in an endless and often fruitless pursuit to gain control over FP by experimenting with their own treatment. Many reported the negative impact of their altered facial expressions on social interactions and a fear of being negatively evaluated. CONCLUSIONS: This study highlights a pressing need to review how FP is managed in the UK. To improve patient well-being, health care professionals could benefit from FP education, and patients from timely access to psychological support and clearer standards of care following diagnosis.

A Systematic Review of the Psychosocial Adjustment of Children and Adolescents with Facial Palsy: The Impact of Moebius Syndrome.

INTRODUCTION: Facial palsy is often associated with impaired facial function and altered appearance. However, the literature with regards to the psychological adjustment of children and adolescents with facial palsy has not been systematically reviewed to date. This paper aimed to review all published research with regards to psychosocial adjustment for children and adolescents with facial palsy. METHODS: MEDLINE, CINAHL, Embase, PsychInfo and AMED databases were searched and data was extracted with regards to participant characteristics, study methodology, outcome measures used, psychosocial adjustment and study quality. RESULTS: Five studies were eligible for inclusion, all of which investigated psychosocial adjustment in participants with Moebius syndrome, a form of congenital facial palsy. Many parents reported their children to have greater social difficulties than general population norms, with difficulties potentially increasing with age. Other areas of psychosocial adjustment, including behaviour, anxiety and depression, were found to be more comparable to the general population. DISCUSSION: Children and adolescents with Moebius syndrome may experience social difficulties. However, they also demonstrate areas of resilience. Further research including individuals with facial palsy of other aetiologies is required in order to determine the psychosocial adjustment of children and adolescents with facial palsy.

Exploring the Experiences of Adults With Microtia: A Qualitative Study.

OBJECTIVE: Microtia is a medically complex condition, with the option of surgery to address hearing and reconstruct the ear. The current study explored adults' experiences of microtia, with a particular focus on the psychosocial impact and experiences of ear reconstruction. The ultimate aim was to identify areas for support and future research that could improve patient care. DESIGN: Fifteen adults (12 females) aged between 20 and 62 years took part in semi-structured interviews. Interviews were audio-recorded, transcribed verbatim, and analyzed using inductive thematic analysis. RESULTS: Three main themes were identified in the data: microtia as an invisible difference, surgery as a welcome opportunity, and living well with microtia. Participants had incorporated microtia into their self-concept and did not report a lasting negative impact on their lives. However, some psychosocial challenges were reported, including anxiety about showing their ears (even after reconstruction), disclosing their diagnosis to romantic partners, surgical decision-making, and feeling unsupported in the work environment. CONCLUSION: Individuals with microtia may benefit from psychosocial interventions to increase confidence, access to support for treatment decision-making, and guidance around disclosing microtia to employers.

The psychosocial impact of facial palsy: A systematic review.

PURPOSE: Facial palsy is a condition which can lead to significant changes in facial function and appearance. People with facial palsy often report psychosocial difficulties, including withdrawal from social activities, anxiety, negative body image, and low mood. This paper aimed to review all published research investigating the psychosocial impact of facial palsy on adults. METHODS: A systematic search of MEDLINE, CINAHL, EMBASE, PsycINFO, and AMED databases was performed. The quality of included studies was assessed, and data were extracted with regard to characteristics of participants; study methodology and design; outcome measures used; and psychosocial outcomes. RESULTS: Twenty-seven studies met inclusion criteria. A high proportion of people with facial palsy reported clinically significant levels of anxiety and depression, with greater difficulties typically reported by females, compared to males. Other difficulties consistently reported include low quality of life, poor social function, and high levels of appearance-related distress. Objective severity of facial palsy was consistently shown to not be associated with anxiety or depression, with psychological factors instead likely mediating the relationship between the severity of facial palsy and psychosocial well-being. CONCLUSIONS: Irrespective of objective symptom severity, facial palsy has the potential to have a significant impact on psychosocial well-being and quality of life. The various methodological limitations of the included studies are discussed, along with clinical implications, including the need for greater access to psychological screening and interventions for people with facial palsy.

A Web-Based Self-Help Psychosocial Intervention for Adolescents Distressed by Appearance-Affecting Conditions and Injuries (Young Persons' Face IT): Feasibility Study for a Parallel Randomized Controlled Trial.

BACKGROUND: Disfigurement (visible difference) from wide-ranging congenital or acquired conditions, injuries, or treatments can negatively impact adolescents' psychological well-being, education and health behaviours. Alongside medical interventions, appearance-specific cognitive behavioural and social skills training to manage stigma and appearance anxiety may improve psychosocial outcomes. YP Face IT (YPF), is a Web-based seven session self-help program plus booster quiz, utilising cognitive behavioural and social skills training for young people (YP) struggling with a visible difference. Co-designed by adolescents and psychologists, it includes interactive multimedia and automated reminders to complete sessions/homework. Adolescents access YPF via a health professional who determines its suitability and remotely monitors clients' usage. OBJECTIVE: To establish the feasibility of evaluating YPF for 12-17 year olds self-reporting appearance-related distress and/or bullying associated with a visible difference. METHODS: Randomized controlled trial with nested qualitative and economic study evaluating YPF compared with usual care (UC). Feasibility outcomes included: viability of recruiting via general practitioner (GP) practices (face to face and via patient databases) and charity advertisements; intervention acceptability and adherence; feasibility of study and data collection methods; and health professionals' ability to monitor users' online data for safeguarding issues. Primary psychosocial self-reported outcomes collected online at baseline, 13, 26, and 52 weeks were as follows: appearance satisfaction (Appearance Subscale from Mendleson et al's (2001) Body Esteem Scale); social anxiety (La Greca's (1999) Social Anxiety Scale for Adolescents). Secondary outcomes were; self-esteem; romantic concerns; perceived stigmatization; social skills and healthcare usage. Participants were randomised using remote Web-based allocation. RESULTS: Thirteen charities advertised the study yielding 11 recruits, 13 primary care practices sent 687 invitations to patients on their databases with a known visible difference yielding 17 recruits (2.5% response rate), 4 recruits came from GP consultations. Recruitment was challenging, therefore four additional practices mass-mailed 3,306 generic invitations to all 12-17 year old patients yielding a further 15 participants (0.5% response rate). Forty-seven YP with a range of socioeconomic backgrounds and conditions were randomised (26% male, 91% white, mean age 14 years (SD 1.7)); 23 to YPF, 24 to UC). At 52 weeks, 16 (70%) in the intervention and 20 (83%) in UC groups completed assessments. There were no intervention-related adverse events; most found YPF acceptable with three withdrawing because they judged it was for higher-level concerns; 12 (52%) completed seven sessions. The study design was acceptable and feasible, with multiple recruitment strategies. Preliminary findings indicate no changes from baseline in outcome measures among the UC group and positive changes in appearance satisfaction and fear of negative evaluation among the YPF group when factoring in baseline scores and intervention adherence. CONCLUSIONS: YPF is novel, safe and potentially helpful. Its full psychosocial benefits should be evaluated in a large-scale RCT, which would be feasible with wide-ranging recruitment strategies. TRIAL REGISTRATION: ISRCTN registry ISRCTN40650639; http://www.isrctn.com/ISRCTN40650639.

The provision of specialist psychosocial support for people with visible differences: A European survey.

A substantial body of research has demonstrated the challenges commonly facing people with visible differences (disfigurements) and explored the potential benefits offered by specialist psychosocial support and intervention for those who are negatively affected. However, little is known about the availability of such support in Europe for people whose appearance is in any way different to 'the norm'. This survey of 116 psychosocial specialists from 15 European countries, working with a range of patient groups, has shown a tendency for specialists to prioritise Cognitive-behavioural-based approaches, amongst a wide range of other approaches and interventional techniques. It indicates variations in the availability of support, and a perceived need for improved access to interventions, additional training, and greater awareness of the psychosocial issues associated with visible differences.

Recruiting young people with a visible difference to the YP Face IT feasibility trial: a qualitative exploration of primary care staff experiences.

BACKGROUND: Qualitative research methods embedded within feasibility trials are of significant value as they can provide important information for a definitive trial, often unable to be fulfilled by quantitative methods alone. In addition, such information can aid researchers running other trials or evaluating interventions on a similar topic. Aim This study aimed to explore GP and nurses' experiences of recruiting to a trial exploring the feasibility of evaluating YP Face IT, a novel online psychosocial intervention to support young people with appearance-altering conditions. METHODS: During the recruitment period, a focus group with participating GPs and nurses explored recruitment challenges. In addition, at the end of the recruitment period, telephone interviews were conducted with eight GPs and nurses involved in recruiting to the study, in order to inform a definitive trial of YP Face IT. Transcripts were subjected to thematic analysis. Findings Despite reporting that the study was valuable and interesting, interviewees struggled to recruit in-consultation. They appeared to lack confidence in raising the sensitive issue of a visible difference and adopted strategies to avoid mentioning the topic. Participants felt the nature of the target population, as well as pressures of the primary care environment presented challenges to recruitment, but welcomed YP Face IT as an intervention that could address unmet support needs. Primary care staff may benefit from training to help them raise the subject of a visible difference with young people in order to identify those that require additional support.

Psychological Aspects of Bariatric Surgery as a Treatment for Obesity.

PURPOSE OF REVIEW: Little is known about the psychological effects on life after bariatric surgery despite the high prevalence of psychological disorders in candidates seeking this procedure. Our review discusses the literature around the psychological impact of bariatric surgery, exploring whether the procedure addresses underlying psychological conditions that can lead to morbid obesity and the effect on eating behaviour postoperatively. RECENT FINDINGS: Findings show that despite undisputed significant weight loss and improvements in comorbidities, current literature suggests some persisting disorder in psychological outcomes like depression and body image for patients at longer term follow-up, compared to control groups. Lack of postoperative psychological monitoring and theoretical mapping limits our understanding of reasons behind these findings. Reframing bariatric approaches to morbid obesity to incorporate psychological experience postoperatively would facilitate understanding of psychological aspects of bariatric surgery and how this surgical treatment maps onto the disease trajectory of obesity.

Study protocol of the YP Face IT feasibility study: comparing an online psychosocial intervention versus treatment as usual for adolescents distressed by appearance-altering conditions/injuries.

INTRODUCTION: A significant number of adolescents suffer extensive and enduring difficulties such as social anxiety, body image dissatisfaction, low self-esteem and bullying as a result of conditions or injuries that affect their appearance (eg, craniofacial and skin conditions, treatment side effects and scarring). Evidence-based psychosocial interventions to meet their specific needs are currently lacking. YP Face IT, developed by the UK's Centre for Appearance Research in collaboration with clinical experts and young people, is an innovative online psychosocial intervention designed to offer this group immediate support, advice and coping strategies. It has been endorsed by young people, their parents/carers, GPs, clinical psychologists and health professionals working with those affected by appearance-related conditions. METHODS AND ANALYSIS: Young people aged 12-17 with an appearance-altering condition/injury that self-identify as experiencing appearance-related distress, teasing or bullying will be invited to participate via GP practices and UK charities. Consenting participants will be randomised to the intervention (YP Face IT) or the treatment as usual (TAU) control group. Outcome measures will be completed by young people and their parents/carers at baseline, 13, 26 and 52 weeks. Primary outcome measures will be the Body Esteem Scale and the Social Anxiety Scale for Adolescents. Participants will complete other health-related outcome measures and resource use questionnaires for health economic analysis. We will assess recruitment rates, acceptability of the YP Face IT programme, adherence and retention to treatment, questionnaire completion rates, variation of TAU in Primary Care and the feasibility of GP practice staff supervising young people's use of YP Face IT. ETHICS AND DISSEMINATION: This feasibility trial protocol (V.1, 3 March 2014), received a favourable ethical opinion from the NRES Committee South West-Frenchay (reference number 14/SW/0058). Findings will be disseminated through academic peer-reviewed publications, conferences and to participating GP practices and charities supporting those with conditions affecting appearance. TRIAL REGISTRATION NUMBER: ISRCTN40650639; Pre-results.

Older adults' experiences of living with cleft lip and palate: a qualitative study exploring aging and appearance.

Objective : To explore older adults' experiences of living with cleft lip and/or palate (CL/P), focusing on aging and appearance. Design : An exploratory-descriptive qualitative study. Participants : Individual semi-structured interviews (five via telephone, one face-to-face) conducted with six adults between the ages of 57 and 82 years. Results : Interview transcripts were analyzed using interpretative phenomenological analysis, which resulted in five themes: cleft across the life span, keeping up appearances, being one of a kind, resilience and protection, and cleft in an ever-changing society. A CL/P had an ongoing impact on participants' lives, although its relevance shifted over time and some aspects of life (e.g., romantic relationships, decisions about having children of their own) were particularly affected. Participants seemed at ease living with CL/P as an older adult and considered it an important aspect of their identity, yet they still described feeling isolated at times and had little contact with other people with a cleft. They felt that health care could be more considerate to the needs of older people with a cleft, particularly around dentistry and information provision. Participants thought societal attitudes toward visible differences had changed over the years, but not necessarily for the better. A paradox was evident between reports of being noticed by others because of their cleft and simultaneously feeling invisible or ignored because of their age. Conclusions : These findings have implications for provision of care for older adults with a CL/P and for younger people with a CL/P who will be the older generation of the future.