Supporting individuals with a visible difference: A UK survey of needs and preferences

Individuals with visible differences, resulting from injuries, health conditions, or treatment, can face varied and lasting psychosocial effects. Existing psychosocial interventions are limited, with inconsistent support noted by specialists. Improved provision and accessibility are crucial; yet, the self-perceived needs remain underreported. This study explored the self-reported support needs of affected adults to better understand their needs and inform support provision. An online survey conducted in the UK from October to December 2022 inquired about support preferences, delivery methods, and current and future anticipated considerations when seeking assistance. Quantitative data were analyzed statistically, and open-ended responses were analyzed using qualitative content analysis. Five hundred and fifty individuals (aged 18-82 years; 489 (88.9 %) female) participated. The majority (80.5 %) wanted more information on potential treatments, while 53.6 % wanted insights into causes, and 61.3 % wanted help accepting their appearance. Preferred sources included healthcare professionals (89.3 %), online/digital platforms (websites 65.8 %, online support groups 47.6 %) and in-person support (counseling (45.8 %), support groups (37.5 %)). Participants' support-seeking decisions were influenced by access to condition-specific information, evidence-based practices, and healthcare professional awareness. Individuals with visible differences require holistic support from various providers, delivered in a range of formats. Findings can inform support strategies and services.