Social participation of patients with epidermolysis bullosa: barriers and facilitators in education, employment, and economic life - a biographic interview study.

backgroundEpidermolysis Bullosa (EB) is a rare, inherited skin disorder characterized by skin fragility, leading to painful blisters and wounds. While protective measures are essential for managing EB, they can inadvertently restrict physical activity and social participation. Recognizing this dilemma, the current psychosocial care guidelines for EB emphasize the need to support social participation as a key priority. Accordingly, this study explores barriers and facilitators influencing participation in education, employment, and economic life, as conceptualized by the International Classification of Functioning, Disability, and Health (ICF).

methodsA qualitative research design using biographical interviews was employed. Twelve adults with EB were recruited via purposive sampling. Interviews were transcribed and analysed through deductive qualitative content analysis, guided by the ICF framework.

resultsDuring the early stages of education, peer attitudes and bullying were identified as major barriers, while parental advocacy, supportive teachers, and peers helped mitigate exclusion. In the later stages of education (higher education and vocational training), frequent transitions in teachers, classrooms, and peers required participants to continuously renegotiate adjustments, which before used to be a one-time task. In employment, barriers included discrimination during job applications and inadequate support from employment agencies, whereas flexible arrangements (e.g., remote work) promoted participation. In economic life, complex bureaucratic procedures hindered access to social security benefits and medical reimbursements, increasing participants’ financial and psychological burden. Patient organizations significantly alleviated these burdens by assisting with paperwork and administrative navigation.

conclusionsLiving with EB necessitates constant care to avoid physical stressors, yet protective measures can unintentionally restrict participation. This study identifies 17 environmental factors shaping participation across education, employment, and economic life, with uninformed attitudes emerging as a persistent barrier in all life areas. Supporting patient organizations in their advocacy efforts may help reduce stigma, improve awareness, and ultimately enhance social participation of individuals with EB.