The Role of Social Work in Supporting Individuals with Epidermolysis Bullosa and Their Families: Community Social Services as the Coordinating Hub

Epidermolysis Bullosa is a group of rare genodermatoses characterized by extreme mucocutaneous fragility, significantly affecting the quality of life of those who live with the condition and their families, thereby making integrated and coordinated social work intervention with other health and social care professionals essential. This qualitative descriptive study examines social work practice with individuals with Epidermolysis Bullosa through online open-ended surveys administered to twenty professionals, analyzed using a reflexive thematic approach. The findings reveal key barriers, including the lack of specialized training, the absence of standardized protocols, and administrative complexity, as well as the need to address intersectional factors that exacerbate socioeconomic vulnerability. Despite these challenges, social work intervention contributes to enhancing family autonomy, improving caregiver well-being, and promoting social, educational, and occupational inclusion. The study highlights the importance of strengthening such interventions through interinstitutional coordination, the development of structured protocols, and the central role of community social services. In conclusion, advancing specialized training and consolidating coordination structures may significantly improve the quality of care and the well-being of affected individuals and their families.