Everyday life with epidermolysis bullosa: A qualitative study of parental experiences

BACKGROUND: Epidermolysis bullosa is a rare genetic condition characterized by skin fragility and chronic wounds, requiring complex and ongoing daily care. Parents assume primary responsibility for caregiving; however, limited evidence exists regarding their lived experiences and the impact of caregiving on family life. OBJECTIVE: To explore parents' experiences of managing everyday life with a child with EB. METHODS: A qualitative study guided by hermeneutic phenomenology was conducted. Purposive and snowball sampling strategies were used to recruit parents through EB patient associations and family networks in Spain. Thirteen semi-structured in-depth interviews were carried out, audio-recorded, transcribed verbatim and analyzed following van Manen's hermeneutic phenomenological framework to generate themes and subthemes. RESULTS: Two main themes were identified: 1. Everyday care as a continuous learning process, including the subthemes: 1.1. The impact of wound care on daily caregiving and 1.2. Pain, distress and children's responses to wound care; 2. Parents' experiences with healthcare and social systems, with the subthemes: 2.1. Financial strain and access to essential resources, 2.2. Experiencing stigma and misunderstanding in social contexts and 2.3. Navigating school life and social participation. CONCLUSION: Parents of children with epidermolysis bullosa experience caregiving as an intensive and ongoing process characterized by emotional burden, uncertainty and continuous adaptation. Daily wound care, children's pain and difficulties accessing healthcare, educational and social support systems shape families' everyday lives. IMPLICATIONS TO PRACTICE: Healthcare providers must transition toward holistic, family-centered care by offering specialized wound management training and psychological support to reduce parental burnout.