Patients' experiences of primary healthcare and dermatology provision for alopecia.

Background: Alopecia describes a group of dermatological conditions characterised by hair loss, which are either non-scarring or scarring in nature, and range from bald patches to complete body hair loss, to general thinning. In the UK, the General Practitioner (GP) is typically the first point of contact, and some patients are referred for specialist dermatology consultation. However, little is known about how individuals with alopecia in the UK experience the care provided by the National Health Service. Objectives: We aimed to understand patients' perceptions of primary healthcare and dermatology provision. Further, we aimed to investigate how care provision and patients' overall patient journey might be improved in the UK, and how these lessons may apply internationally. Methods: An online mixed methods survey was distributed by Alopecia UK to UK-based individuals with alopecia. Open-ended text responses were analysed using qualitative content analysis. Quantitative data were analysed using descriptive analyses and dependent measures t-tests. Results: A total of 291 participants completed the survey. They reported neutral-to-partial dissatisfaction with their GP appointments, with greater satisfaction in their most recent compared to their first appointment. Participants highlighted positive experiences with GPs and dermatologists as well as areas for improvement. Participants also expressed a desire for a greater degree of support and understanding about the psychological impact of alopecia. Conclusions: Results highlight the importance of being empathic and caring healthcare professionals for patients with alopecia, the need for training for GPs on alopecia, as well as a simplified and joined up pathway between primary and secondary healthcare.

Establishing the financial burden of alopecia areata and its predictors.

Background: Alopecia areata (AA) can have a significant impact on wellbeing. Consequently, individuals with AA often seek treatments or products to promote hair regrowth or camouflage their hair loss that incur a financial cost to the individual. Objectives: The current study aimed to examine the direct financial burden of AA to understand the wider impact of the condition and the factors which influence spending on products and services. Methods: A total of 829 United Kingdom based participants completed an online survey. Demographic and condition-specific data were collected, alongside spending on AA-related products and services. Participants were asked about their use of products and services, the associated costs, how they financed these costs, and their household income to determine what percentage of income they spent on products and services. Results: Participants predominantly identified as female (85.9%), white (92.7%) with a mean age of 42.7 years and a median AA duration of 10.94 years. Female gender, Asian ethnicity, lower income, and worse AA symptoms predicted higher spend from income. Wigs were the most common product used and incurred the greatest cost (median £700). The highest cost for men was private dermatology services (median = £550). On average people spent 3% of their disposable income (prior to housing costs) on AA-related products and services. Conclusions: This study outlines the risk factors associated with higher financial burden from managing AA which require consideration by health providers, commissioners, and policy makers when designing services to support the wellbeing of people living with AA.

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.

A systematic review of interventions aiming to promote positive body image in children and adolescents.

Evidence shows interventions can improve positive body image in adult women. This systematic review examined the evidence of efficacy of interventions that aimed to increase positive body image in children and young people aged under 18 years. The authors followed PRISMA guidelines for the review. Searches of CINAHL Plus, Medline, PsychINFO, Wiley Online Library, SCOPUS and grey literature were conducted up to February 2021 and identified 4171 papers. Thirteen studies evaluating 12 interventions, designed for children/adolescents aged 9-18 years, were eligible and evaluated using the Effective Public Health Practice Project (EPHPP) Quality Assessment Tool. The studies evaluated body appreciation, body-esteem, and embodiment. Studies using cognitive dissonance, peer support, and psychoeducation had evidence of improving body appreciation and body-esteem in adolescent girls. However, evidence of efficacy for younger children and boys was lacking and the studies ranged in methodological quality. Further research should rigorously evaluate positive body image interventions using second-generation measures that assess specific components of positive body image and consider how to promote positive body image in young children and boys.

An Acceptance and Commitment Therapy Prototype Mobile Program for Individuals With a Visible Difference: Mixed Methods Feasibility Study.

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.

Designing an mHealth Intervention for People With Visible Differences Based on Acceptance and Commitment Therapy: Participatory Study Gaining Stakeholders' Input.

BACKGROUND: Given their growing popularity, mobile health (mHealth) apps may offer a viable method of delivering psychological interventions for people with an atypical appearance (ie, visible difference) who struggle with appearance-related distress. Acceptance and Commitment Therapy (ACT), a third-wave cognitive behavioral approach, has been used effectively in mHealth and is being increasingly applied clinically to common psychosocial difficulties associated with visible differences. We planned to design an ACT-based mHealth intervention (ACT It Out) for this population. OBJECTIVE: The aim of this study is to gain key stakeholder input from user representatives and psychological clinicians to optimize the intervention's design for future development and uptake. To do so, we explored considerations relating to mHealth as a delivery platform for adults with visible differences and elicited stakeholders' design preferences and ideas based on initial author-created content. METHODS: Within a participatory design framework, we used a mix of qualitative methods, including usability sessions and a focus group in a face-to-face workshop, and interviews and textual feedback collected remotely, all analyzed using template analysis. A total of 6 user representatives and 8 clinicians were recruited for this study. RESULTS: Our findings suggest that there are likely to be strengths and challenges of mHealth as an intervention platform for the study population, with key concerns being user safeguarding and program adherence. Participants expressed design preferences toward relatable human content, interactive and actionable features, flexibility of use, accessibility, and engaging content. CONCLUSIONS: The findings offer valuable design directions for ACT It Out and related interventions, emphasizing the need to carefully guide users through the intervention while acknowledging the limited time and space that mHealth affords.

Promoting Psychosocial Adjustment in Individuals Born With Cleft Lip and/or Palate and Their Families: Current Clinical Practice in the United Kingdom.

OBJECTIVES: The importance of psychosocial aspects of care has received growing recognition in recent years. However, the evidence base for psychosocial intervention remains limited. Specialist clinicians working in cleft lip and/or palate (CL/P) services hold a wealth of knowledge and experience yet to be elicited. The aims of this study were to identify common psychosocial challenges and potential risk and/or protective factors for psychosocial distress from the perspective of specialist clinicians and to establish the types of interventions currently being delivered in practice. DESIGN: Individual interviews with 17 clinical nurse specialists and 19 specialist clinical psychologists, representing all 16 UK CL/P surgical sites. Data were analyzed using inductive content analysis. RESULTS: Numerous psychosocial challenges affecting individuals with CL/P and their families were identified across the life span. Risk factors were predominantly contextual in nature, while protective factors appeared amenable to intervention. Participants drew upon a range of therapeutic models and approaches to guide formulation and intervention, while acknowledging the lack of evidence to support these approaches in CL/P populations specifically. CONCLUSIONS: Findings have important implications for the way in which psychosocial support for CL/P and related conditions is delivered and evaluated. A framework for the standardized assessment of holistic individual and familial well-being is proposed. Suggestions for increasing the evidence base for specific psychosocial interventions are made, including enhanced family functioning; social, emotional, and appearance concerns; treatment decision-making; and screening for psychosocial and developmental issues.

Experiential avoidance and cognitive fusion mediate the relationship between body evaluation and unhelpful body image coping strategies in individuals with visible differences.

Psychological flexibility, the capacity to be open to any internal stimuli and act in accordance with valued ends, has been identified as an explanatory variable in how people cope with body concerns. The role of psychological flexibility is unexplored in adults with an atypical appearance due to a health condition, injury, or medical treatment (collectively visible difference), who often encounter multiple day-to-day body image threats. Testing two core components of psychological flexibility, namely experiential avoidance (a desire to avoid or get rid of unpleasant internal experiences) and cognitive fusion (taking thoughts literally), can also provide a more precise theoretical model, with clearer implications for psychological intervention. This survey study investigated whether each psychological flexibility component mediated the relationship between body evaluation and two unhelpful body image coping strategies (behavioural avoidance and appearance-fixing behaviours) in 220 adults with various causes of visible difference. Controlling for demographic variables and subjective noticeability of visible difference, results suggest that cognitive fusion partially mediated the relationship for both body image coping strategies, and experiential avoidance partially mediated behavioural avoidance but not appearance-fixing behaviours. Cognitive fusion may be a particularly important cognitive process in the mechanisms underpinning unhelpful body image coping strategies in this population.

A Systematic Review of the Effectiveness of Acceptance and Commitment Therapy (ACT) for Body Image Dissatisfaction and Weight Self-Stigma in Adults.

Body image dissatisfaction (BID) and weight self-stigma are prevalent and associated with physical and psychological ill-health. Acceptance and Commitment Therapy (ACT) is increasingly employed for both, yet little is known about its effectiveness. Searches of 12 databases identified six studies using online, face-to-face or self-help ACT interventions for BID or weight self-stigma, of varying duration and intensity. Their effectiveness and quality were evaluated. Two reported improved BID, three improved weight self-stigma, and one reported no impact on weight self-stigma. Methodological issues (small sample sizes, lack of allocation concealment, attention control and long-term follow up) impacted the validity of findings. Due to the small number of studies and poor study quality, the effectiveness of ACT for BID and weight self-stigma remains unclear. Nonetheless findings suggest psychological flexibility may facilitate reduction in BID and weight self-stigma and indicate that brief online as well as lengthy face-to-face delivery may be useful. Suggestions for further research are made.

Acceptance and Commitment Therapy for People Experiencing Appearance-Related Distress Associated With a Visible Difference: A Rationale and Review of Relevant Research.

People may have a visibly different appearance due to various causes, such as congenital conditions, injury, disease, or medical treatment. Some individuals with a visible difference experience social anxiety and isolation, body image dissatisfaction, shame and self-stigma, psychological trauma, and challenges managing their condition. In this article, we synthesize the relevant literature and present the theoretical rationale for the application of Acceptance and Commitment Therapy (ACT), a third-wave behavioral therapy combining mindfulness skills and value-driven action, to those experiencing distress relating to an unusual or altered appearance. We also outline how ACT may be tailored to the specific considerations of this population and recommend next steps in researching its acceptability and clinical effectiveness.

Recruiting to cohort studies in specialist healthcare services: Lessons learned from clinical research nurses in UK cleft services.

AIMS AND OBJECTIVES: To explore the experiences of clinical research nurses recruiting patients in a large specialist care-based cohort study. BACKGROUND: Longitudinal studies are vital to better understand the aetiology and moderators of health conditions. This need is especially salient for congenital conditions, such as cleft lip and/or palate, where establishing large, comprehensive data sets from birth is vital to improve understanding and to inform interventions. Various barriers exist in recruiting patients to large cohort studies. The role of clinical research nurses embedded within health settings has grown over past decades to facilitate data collection, yet challenges remain. DESIGN: Qualitative descriptive study. METHODS: Individual semi-structured interviews with 12 clinical research nurses based in 10 National Health Service cleft services across the UK, recruiting to the Cleft Collective Birth Cohort Study. RESULTS: Of seven emergent themes, three highlighted challenges to recruiting patients, another three described facilitative factors, and one theme overlapped challenges and facilitators. Challenges included the life circumstances of potential participants; language barriers; and limited clinical research nurse time for study. Facilitative factors included integrating research into clinical practice; patient information shared with clinical research nurses; and support from the university-based research study team. The theme "Method of data collection" related to both challenges and facilitators. CONCLUSIONS: The qualitative data from clinical research nurses recruiting to a large birth cohort study provide helpful practical detail for specialist healthcare teams, specialist nurses, clinical research nurses and researchers looking to optimise recruitment and data collection in longitudinal studies. RELEVANCE TO CLINICAL PRACTICE: The findings suggest the importance of specialist clinical services and research study teams cooperating to embed research into everyday clinical practice, without compromising care. This should facilitate patients' willingness to participate in important research like the Cleft Collective study and provide them with a positive experience of research.