Publications from the Centre for Appearance Research (CAR)

Alongside the typical challenges of parenting, parents and carers of children with visible differences can experience additional psychosocial challenges including anxiety, stress, guilt, and concerns about stigma and discrimination (Thornton et al., 2021). The Visible Difference Parenting Toolkit is an ACT-based intervention aimed at improving psychosocial wellbeing for this group of parents/carers. This study examined the acceptability and potential benefit of the intervention utilising a mixed-methods single arm pre-post design. Parents/carers (baseline n = 173) completed an online survey at three time points: 1) baseline, 2) post-intervention, and 3) two-month follow-up. Paired t-tests on available matched data assessed differences in outcome measures between timepoints (83 pairs at post-intervention, 62 at follow-up). Open-ended responses were analysed using content analysis. Statistically significant reductions in parent-reported depression and anxiety and statistically significant improvements in parent-reported self-efficacy were found between baseline and post-intervention. Additionally, significant reductions in parent-reported depression and anxiety, and significant improvements in self-compassion, self-efficacy, and psychological flexibility were found between baseline and follow-up. Parenting stress did not significantly improve immediately post-intervention but showed significant change at follow-up. Responses to open-ended questions indicated that although some ongoing concerns remained about future challenges, the intervention helped parents/carers feel more knowledgeable and confident in supporting their child. This suggests The Visible Difference Parenting Toolkit is an acceptable and potentially useful intervention for supporting parents/carers of children with a visible difference. This novel intervention addresses a gap in the current support provision in the visible difference field and is now freely available through www.VisibleDifferenceSupportHub.com. 

The COVID-19 pandemic accelerated use of remote communication in psychological support, increasing interest in the effectiveness and acceptability of remote interventions. However, little is known about the provision of remote versus in-person high-level specialist psychological support for individuals with a visible difference. This study aimed to explore UK-based specialists’ experiences of delivering remote versus in-person high-level psychological interventions to individuals with a visible difference, focusing on perceived demand, preferences, and service provision. Thirty healthcare professionals across burns, cleft, craniofacial, and other specialties completed a mixed-methods online survey. We conducted descriptive statistical analysis. Qualitative data were analysed using Reflexive Thematic Analysis. The majority of participants (90%) reported offering both remote and in-person support, with many noting increased remote provision since the pandemic. Sixty-seven per cent reported they were ‘always’ able to offer patients a choice of modality, and 17% were ‘sometimes’ able to offer choice. Three themes were identified: “Maintaining therapeutic space”, “Remote support as a bridge”, and “Focus on difference”. In-person support was seen as offering greater therapeutic depth and opportunities for different therapeutic exercises, particularly for appearance-related concerns. Remote support was valued for its logistical and emotional accessibility, offering access to support for those unwilling or unable to access support in-person. Whilst appearing on camera was described as a barrier to remote support, participants identified specific adaptations to mitigate this. Findings highlight the need for flexible, tailored psychological services that balance therapeutic depth with accessibility, informing future clinical practice and intervention development for individuals with a visible difference.

Disclosure research has largely focused on invisible stigmatized identities, assuming that, for people with visible stigmas, there is no need to “disclose the obvious.” However, people with observable disabilities do face disclosure decisions, precisely because their disabilities are observable. Pressure to disclose--from staring and intrusive questions --threatens disclosure autonomy. Drawing on Self-Determination Theory (SDT)—which posits basic psychological needs for autonomy, competence, and relatedness—this study investigated the influence of antecedent factors on disclosure autonomy, disclosure processes, and ultimately, well-being. In the first study of disclosure among people with diverse observable disabilities, semi-structured interviews with 25 adults with observable disabilities (e.g., mobility disability, blindness, deafness) explored non/disclosure experiences. Directed qualitative content analysis supported a model indicating that context (e.g., setting, access needs), disability factors (observability, type), and personal factors (intersecting identities) impact perceived disclosure autonomy, approach vs. avoidance motivation, and disclosure depth. In turn, these processes relate to well-being outcomes, including satisfaction of SDT needs. Threats to disclosure autonomy were common, with participants feeling compelled to disclose due to access needs or intrusive questions. Autonomous disclosure was associated with positive outcomes like competence and belonging, while compelled disclosure was linked to distress. Findings underscore the need for systemic changes, including universal design, to reduce the burden of compelled disclosure. This study advances theory by providing the first disclosure model in psychology to include the experiences of people with observable disability. Future work will examine potential causal pathways within the proposed model and assess how it might extend existing disclosure frameworks.

Objectives: Social media is an integral and ever-present part of young people’s everyday lives. This includes young people with visible differences, who may use social media for additional purposes, such as to find information about their condition. However, very little research focuses on the unique experiences of this group when using social media. Therefore, this study aimed to explore the social media experiences of young people with visible differences. Methods: This study used an inductive qualitative approach. Twelve participants aged 13-17 years (9 girls, 3 boys, Mage= 15.58) with a range of visible differences were recruited online via a group of charitable organisations. Participant-driven, semi-structured photo-elicitation interviews were used to generate the data, which were analysed using reflexive thematic analysis. Results: Three themes were generated: 1) Scroll at your own risk; 2) A whole new world of visible difference; and 3) Making social media work for me. Conclusions: Young people with visible differences appear aware of the potential harms of using social media and employ various strategies to keep themselves safe and protect their wellbeing. Despite its potential harms, social media can also benefit young people with visible differences as it allows them to connect with others with similar experiences who they may not otherwise meet offline. This can have a positive impact on young people’s wellbeing and subsequently motivate them to use social media to support others with visible differences.

Appearance concerns after burns start soon after injury. However, early psychological interventions to support individuals with their changed appearance are absent. This study investigated the acceptability of an early acceptance and commitment therapy (ACT) intervention delivered by a psychological therapist either in person or virtually to help individuals adjust to changes to their appearance after burns. As a secondary objective, the potential effectiveness of ProACTive was also investigated. Using mixed-methods, 13 adults (eight women, five men) participated. Acceptability was measured by uptake rates, module completion rates and interview data. Over two-thirds of participants completed all modules. Three main themes were identified from interviews: An acceptable intervention; Valuing the therapeutic relationship; and Early support is key. Data suggested that ProACTive may be acceptable, although some inconsistencies within the data were observed. Ratings of helpfulness were positive and qualitative feedback suggested that ProACTive seemed helpful by providing space to explore and reflect on appearance changes, developing psychological flexibility and self-compassion, and preparing individuals for being around other people. Positive and negative affect significantly decreased (moderate effect sizes) but no significant changes on appearance concerns, psychological flexibility or self-compassion (small effect sizes) were revealed. ProACTive may be an acceptable early psychological intervention to support the adjustment of appearance changes after burns. Acceptability may be higher in individuals with appearance concerns and those admitted to hospital. The intervention holds promise soon after burns but further research on acceptability and effectiveness is needed.