Appear Networks (Sweden)

Parents of children with craniosynostosis may experience psychological distress, particularly during intensive periods of treatment. Yet, recent research indicates parents may not be accessing the support they need to cope with common challenges. The aim was to develop an evidence-based booklet to promote psychological health in families undergoing surgery and to assess the acceptability of the booklet among the craniosynostosis community. Researchers collaborated with UK charity Headlines Craniofacial Support, 5 parent representatives, and 2 specialist clinical psychologists to develop the booklet based on data obtained from online focus groups, individual interviews, and written accounts. The draft booklet was attached to an online acceptability survey and distributed to a broader group of parents and multidisciplinary craniofacial specialists for feedback. A total of 52 complete responses to the online acceptability survey were received, and acceptability (measured by the number of respondents who would recommend the booklet) was 100%. All respondents supported the UK-wide distribution of the booklet. Evidence for psychological intervention in the craniofacial field remains scarce, and specialist teams may be under-resourced to effectively screen and support families. It is hoped this booklet can begin to address the gap in psychological support for families affected by craniosynostosis.

BACKGROUND Mobile apps may offer a valuable platform for delivering evidence-based psychological interventions for individuals with atypical appearances, or visible differences, who experience psychosocial appearance concerns such as appearance-based social anxiety and body dissatisfaction. Before this study, researchers and stakeholders collaboratively designed an app prototype based on acceptance and commitment therapy (ACT), an evidence-based form of cognitive behavioral therapy that uses strategies such as mindfulness, clarification of personal values, and value-based goal setting. The intervention also included social skills training, an established approach for increasing individuals’ confidence in managing social interactions, which evoke appearance-based anxiety for many. OBJECTIVE In this study, the authors aim to evaluate the feasibility of an ACT-based app prototype via the primary objectives of user engagement and acceptability and the secondary feasibility objective of clinical safety and preliminary effectiveness. METHODS To address the feasibility objectives, the authors used a single-group intervention design with mixed methods in a group of 36 participants who have a range of visible differences. The authors collected quantitative data via measures of program use, satisfaction ratings, and changes over 3 time points spanning 12 weeks in outcomes, including selected ACT process measures (experiential avoidance, cognitive defusion, and valued action), scales of appearance concerns (appearance-based life disengagement, appearance-fixing behaviors, appearance self-evaluation, and fear of negative appearance evaluation), and clinical well-being (depression and anxiety). Semistructured exit interviews with a subsample of 12 participants provided qualitative data to give a more in-depth understanding of participants’ views and experiences of the program. RESULTS In terms of user engagement, adherence rates over 6 sessions aligned with the upper boundary of those reported across mobile mental health apps, with over one-third of participants completing all sessions over 12 weeks, during which a steady decline in adherence was observed. Time spent on sessions matched design intentions, and engagement frequencies highlighted semiregular mindfulness practice, mixed use of value-based goal setting, and high engagement with social skills training. The findings indicate a good overall level of program acceptability via satisfaction ratings, and qualitative interview findings offer positive feedback as well as valuable directions for revisions. Overall, testing for clinical safety and potential effectiveness showed encouraging changes over time, including favorable changes in appearance-related life disengagement, appearance-fixing behaviors, and selected ACT measures. No iatrogenic effects were indicated for depression or anxiety. CONCLUSIONS An ACT-based mobile program for individuals struggling with visible differences shows promising proof of concept in addressing appearance concerns, although further revisions and development are required before further development and more rigorous evaluation.

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Efforts to increase the evidence base in speech and language therapy are often limited by methodological factors that have restricted the strength of the evidence to the lower levels of the evidence hierarchy. Where higher graded studies, such as randomized controlled trials, have been carried out, it has sometimes been difficult to obtain sufficient power to detect a potential effect of intervention owing to small sample sizes or heterogeneity in the participants. With certain clinical groups such as cleft lip and palate, systematic reviews of intervention studies have shown that there is no robust evidence to support the efficacy of any one intervention protocol over another. To describe the setting up of an observational clinical cohort study and to present this as an alternative design for answering research questions relating to prevalence, risk factors and outcomes from intervention. The Cleft Collective Speech and Language (CC-SL) study is a national cohort study of children born with cleft palate. Working in partnership with regional clinical cleft centres, a sample size of over 600 children and 600 parents is being recruited and followed up from birth to age 5 years. Variables being collected include demographic, psychological, surgical, hearing, and speech and language data. The process of setting up the study has led to the creation of a unique, large-scale data set which is available for researchers to access now and in future. As well as exploring predictive factors, the data can be used to explore the impact of interventions in relation to individual differences. Findings from these investigations can be used to provide information on sample criteria and definitions of intervention and dosage which can be used in future trials. The observational cohort study is a useful alternative design to explore questions around prevalence, risk factors and intervention for clinical groups where robust research data are not yet available. Findings from such a study can be used to guide service-delivery decisions and to determine power for future clinical trials.

Having previously discussed the possibility that appearance-altering conditions may impact on the intimate and sexual lives of some patients, Nick Sharratt, PhD researcher at the Centre for Appearance Research, looks more closely at the Ex-PLISSIT model of interaction which may be deployed in discussing this potentially sensitive topic. He also explores the impact of visible differences on intimacy

Having an appearance-altering condition and dealing with other people's reactions can be distressing. Skin camouflage techniques are designed to disguise the condition, and in doing so, reduce anxiety and boost confidence. But could there be disadvantages to ‘blending in’? Nicola Stock looks at the use of skin camouflage services and their impact on patients' quality of life

In our beauty-obsessed world, where incessant dissatisfaction with appearance is considered to be ‘normal’, it can seem as though those with ‘good looks’ are the ones who have it all. But is it the case that being beautiful can get you further in life? Nicola Stock explores the human fascination with keeping up appearances and highlights the impact of attempting to meet modern unrealistic ideals of beauty

The removal of body hair on the legs, arms and pubic area is commonplace in today's society and being hair-free is associated with beauty and femininity. Not only do adult women feel pressure from their peers and partners to achieve the hairless ideal, but also girls as young as 11 years old are presenting to health professionals with no pubic hair. Heidi Williamson looks hair removal practices in the Western world

While breast cancer remains the most commonly diagnosed cancer among women in the UK, the number of those living with the residual consequences of the disease and its treatment is rising. Women are likely to undergo several different treatments, each accompanied by changes to appearance. This can impose an adverse impact on their body image. Helena Lewis-Smith reviews research in this area