Fabio Zucchelli

Objectives: Develop recommendations for multidisciplinary, multisector care providers involved in supporting individuals with alopecia areata (AA) to promote their well-being of these individuals. AA is a condition that causes hair loss on the scalp and, for some, the head or whole body and is associated with difficulties in psychosocial adjustment. Design: A modified Delphi consensus study with three rounds: round 1 was a qualitative survey to generate recommendations; round 2 involved a rating survey to work towards consensus on important items to retain and round 3 asked panellists from four different support roles to establish the most relevant items for their respective roles. Setting: The UK, across healthcare, charitable and private health and mental health sectors. Participants: Panellists held two forms of expertise. One group consisted of experts in support roles, comprising medical professionals (general practitioners and dermatologists), mental health professionals, peer facilitators and trichologists. All were selected due to their experience of working with individuals who have AA. The other group consisted of experts by experience, namely adults living with AA who had some experience of receiving support from the above care providers. 48 panellists contributed to round 1 (22 experts by support role, 29 experts by experience and 3 with dual roles), 46 to round 2 (21 experts by support role, 27 experts by experience and 3 with dual roles) and 23 experts by support role completed round 3. Data analysis: In round 1, data were analysed using qualitative content analysis. In round 2, panellists rated the importance of all recommendation items on a single 1–5 scale. Consensus was determined by ≥80% agreement between panellists that items were moderately or very important. Results: Multiple candidate recommendations were generated from round 1, and following round 2, all but one were retained in the list presented in round 3. Items rated as relevant to all care providers in round 3 included ‘Validate (and explore) the emotional impact of AA’, ‘Respect and work with individuals’ chosen coping strategies (where no clear harm is caused)’ and ‘There should be a holistic, multi-support-role and multisector approach to psychological support’. There was notable overlap in the recommendation principles generated across each support role, but the details of how these can be delivered by each group differed. There were also a number of unique recommendations for each support role. Conclusions: Medical professionals, mental health professionals, trichologists and peer support facilitators can each play a role in promoting the psychological well-being of individuals with AA. The distinct roles and skill sets of each group point to the need for a multidisciplinary approach to supporting the well-being of affected individuals.

Objectives: Some children born with a craniofacial condition, and their caregivers, can experience psychological difficulties. Psychological flexibility involves responding to internal distressing experiences (eg, emotions) with openness rather than avoidance, being present-focused, and behaving in ways that align with personal values. Psychological flexibility is typically associated with greater psychological well-being. The current study aimed to investigate whether psychological flexibility in caregivers of a child with a congenital craniofacial condition was associated with caregiver and child psychological well-being, to inform the development of interventions likely to help caregivers. It was hypothesized that higher levels of both general and parenting-specific psychological flexibility would be associated with greater psychological well-being in both caregivers and children. Design: A cross-sectional questionnaire study. Setting: Questionnaires were completed online. Participants: Caregivers (N = 89) of children aged 1-5 years with a congenital craniofacial condition. Main outcome measure(s): Questionnaires measuring psychological flexibility, parenting-specific psychological flexibility, caregiver depression and anxiety, and caregiver-reported child well-being. Results: Correlational and linear regression analyses revealed that higher parenting-specific psychological flexibility in caregivers was associated with—and predictive of—lower depression and anxiety in caregivers, and greater well-being in children. Higher general psychological flexibility in caregivers was associated with—and predictive of—reduced caregiver depression and anxiety and increased child well-being. Conclusions: Early identification of caregivers of children with craniofacial conditions exhibiting difficulties with parenting-specific psychological flexibility, and the provision of psychological interventions to enhance psychological flexibility (acceptance and commitment therapy), is indicated for benefiting caregiver and child well-being.

Understanding the needs and experiences of men across many areas of health and well-being has been obstructed by an ongoing difficulty for researchers to sufficiently engage men in qualitative health research. To reach novel, broader insights and ideas in the field of health and social sciences, we reflect on our experiences as researchers in body image, a field historically focused on women, to offer strategies on engaging men in qualitative health research. We present our ideas in three main sections, all underpinned by the centrality of stakeholder involvement and an awareness of the role of masculinities in shaping the research process. First, we address practical methods to reach men as participants. Second, we explore ways of maintaining men’s engagement following recruitment, such as novel approaches to language use in research materials. Lastly, we turn to the thorny challenge of eliciting high-quality data through the process of data collection. We consider tangible strategies as well as a heightened awareness of our positionality as researchers.

Background: The most common forms of hair loss in men, alopecia areata (AA) (an autoimmune condition) and androgenetic alopecia (AGA) (pattern baldness), alter individuals’ appearance in ways that may impact psychological and social wellbeing. We currently have a limited understanding about this impact of alopecia in men, their support needs, and preferences. Objectives: We sought to investigate and explore the psychosocial impact of alopecia on men, alongside their experiences of treatment and support. Methods: The study used a mixed methods cross-sectional online survey with 177 men aged 17–79: 83 with AGA and 94 with AA. Quantitative questions included purpose-made rating scales of men’s support experiences, and standardised measures of wellbeing and appearance-focused anxiety. Qualitative data comprised participants’ answers to an open-ended question asking about their subjectively salient experiences related to their alopecia. Results: The combined findings indicate that while participants in both subsamples had sought minimal support for psychosocial concerns, such concerns were in fact commonplace. Over half of participants (56%–57%) shared qualitative accounts of depleted confidence, while wellbeing scores were on average lower than matched norms. Participants identifying as sexual minority also reported greater appearance-focused anxiety compared to those identifying as straight. Conclusions: The apparent contrast between participants’ minimal help-seeking and accounts of affected wellbeing suggests an unmet support need for men with alopecia. Masculine norms may impede men from accessing psychosocial support, both by discouraging help-seeking behaviours and by encouraging minimisation of appearance concerns. The findings also suggest sexual minority status may pose a greater risk of distress in affected men.

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.

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.

Multidisciplinary health professionals (HPs) are involved in supporting patients who have conditions that affect their appearance. With appearance-associated distress common in this group, acceptance and commitment therapy (ACT) and enhanced communication skills both show effectiveness in helping patients adjust to their conditions. Multidisciplinary HPs are perfectly placed to provide low-level psychological support as paraprofessionals. We present the real-world evaluation of a training programme, ACT Now, which was delivered via the train-the-trainer model to 149 multidisciplinary HPs in six European countries. Trainees completed a 16-item knowledge, attitude and practice survey covering psychoeducation on appearance concerns, ACT applied to the patient group and communication skills, at pre-training, post-training and at 3-or-6-month follow-up. Findings show that trainees’ confidence consistently improved in understanding specific facets of appearance concerns and ACT processes, with largely positive changes in other facets, skewed towards delivery nations in which psychologists delivered the training. Patient communication skills generally improved, though again these were more pronounced in psychologist-led countries. However, an absence of significant improvements in ACT comprehension suggests a challenge in transmitting the ACT model to HPs. Providing more initial training to non-psychologist trainers and embedding post-training skills practice for trainees may help reinforce the ACT component of the training.

Alopecia areata (AA) affects men at similar rates to women, yet comparatively little is known about men’s experience of the condition. We interviewed a demographically diverse group of 18 men with AA to explore this gap. From qualitative thematic analysis, participants’ accounts described a profound yet often-minimised impact of AA on their lives, in the context of poor public awareness and misguided assumptions about AA in men. Conversely, this adversity appeared to facilitate personal growth for many. These findings can help health professionals better understand men’s gendered experience of AA, which we discuss through the lens of masculinities theory.

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.