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It is currently incurable, and care is complex because of the rarity of the disease. Epidermolysis bullosa has a major impact on the lives of people living with it and on their families. In this study, we aimed to explore health care professionals\u2019 (HCPs) experiences of treating and following up on children with EB and their families. Nine HCPs from several health care disciplines participated in semi-structured interviews, which were analyzed through reflexive thematic analysis. Two main themes were identified: caring as an act of balance and facilitating collaboration. All participants experienced the following as challenging: (a) balancing between professional decisions and the provision of guidance to parents and (b) dealing with their own emotions. More systematic research is needed on the psychological impact of caring for children with EB and their families on HCPs.<\/jats:p>","DOI":"10.1177\/20551029251391232","type":"journal-article","created":{"date-parts":[[2025,11,5]],"date-time":"2025-11-05T23:29:52Z","timestamp":1762385392000},"update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":0,"title":["Health care professionals\u2019 experiences of caring for children with severe epidermolysis bullosa"],"prefix":"10.1177","volume":"12","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-2005-284X","authenticated-orcid":false,"given":"Elisabeth","family":"Daae","sequence":"first","affiliation":[{"name":"Oslo University Hospital HF"},{"name":"University of Oslo"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-0329-5671","authenticated-orcid":false,"given":"Kristin Billaud","family":"Feragen","sequence":"additional","affiliation":[{"name":"Oslo University Hospital HF"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Terje","family":"N\u00e6rland","sequence":"additional","affiliation":[{"name":"University of Oslo"},{"name":"Oslo University Hospital"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Charlotte","family":"von der Lippe","sequence":"additional","affiliation":[{"name":"Oslo University Hospital HF"},{"name":"Telemark Hospital Trust"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"179","published-online":{"date-parts":[[2025,11,5]]},"reference":[{"key":"e_1_3_6_2_1","doi-asserted-by":"publisher","DOI":"10.1186\/s13023-022-02596-z"},{"key":"e_1_3_6_3_1","doi-asserted-by":"publisher","DOI":"10.1080\/2159676X.2019.1628806"},{"key":"e_1_3_6_4_1","doi-asserted-by":"publisher","DOI":"10.1111\/jpc.16187"},{"key":"e_1_3_6_5_1","doi-asserted-by":"publisher","DOI":"10.1177\/0969733019889400"},{"key":"e_1_3_6_6_1","first-page":"2355","article-title":"'It breaks my heart': Healthcare practitioners\u2019 caring for families with epidermolysis bullosa","volume":"28","author":"Chateau AV","year":"2023","unstructured":"Chateau AV, Aldous C, Dlova N, et al. 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