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We elicit the views and experiences of both children and their parents to inform the care and support provided. Qualitative semistructured interviews were undertaken with 12 child\u2013parent dyads recruited from the National XP Specialist service in London. We employed a framework approach to analysis. This identified a high level of photoprotection based either on \u201cprotection\u201d to facilitate normal activities or \u201cavoidance\u201d of outdoor activity with priority given to normality in the future. These approaches were shaped by perceptions of clinical risk, the emphasis given to a normal family life and families\u2019 circumstances and resources. The findings contribute to notions of normalization and coping with demanding care regimens and inform approaches to working with families.<\/jats:p>","DOI":"10.1177\/1049732319826561","type":"journal-article","created":{"date-parts":[[2019,2,9]],"date-time":"2019-02-09T05:16:41Z","timestamp":1549689401000},"page":"1275-1286","update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":8,"title":["Approaches to Photoprotection and Normalization in Highly Adherent Families of Children With Xeroderma Pigmentosum in the United Kingdom"],"prefix":"10.1177","volume":"30","author":[{"given":"Rebecca","family":"Anderson","sequence":"first","affiliation":[{"name":"King\u2019s College London, London, United Kingdom"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Jessica","family":"Walburn","sequence":"additional","affiliation":[{"name":"King\u2019s College London, London, United Kingdom"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-5532-8941","authenticated-orcid":false,"given":"Myfanwy","family":"Morgan","sequence":"additional","affiliation":[{"name":"King\u2019s College London, London, United Kingdom"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"179","published-online":{"date-parts":[[2019,2,9]]},"reference":[{"key":"bibr1-1049732319826561","doi-asserted-by":"publisher","DOI":"10.1177\/1359105317714643"},{"key":"bibr2-1049732319826561","doi-asserted-by":"publisher","DOI":"10.1177\/1359105313517277"},{"key":"bibr3-1049732319826561","doi-asserted-by":"publisher","DOI":"10.1136\/jmg.2010.083022"},{"key":"bibr4-1049732319826561","doi-asserted-by":"publisher","DOI":"10.1177\/1468794113490718"},{"key":"bibr5-1049732319826561","doi-asserted-by":"publisher","DOI":"10.1016\/j.socscimed.2010.05.028"},{"key":"bibr6-1049732319826561","doi-asserted-by":"publisher","DOI":"10.4324\/9781315657349"},{"key":"bibr7-1049732319826561","doi-asserted-by":"crossref","unstructured":"Coventry P. 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