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In this study, we examine photoprotection for children with Xeroderma pigmentosum (XP), a rare genetic skin disease requiring rigorous photoprotection, to reduce risks of severe burning and skin cancers from exposure to ultraviolet radiation (UVR). 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–parent 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 “protection” to facilitate normal activities or “avoidance” 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’ circumstances and resources. The findings contribute to notions of normalization and coping with demanding care regimens and inform approaches to working with families.

Original publication

DOI

10.1177/1049732319826561

Type

Journal article

Journal

Qualitative Health Research

Publisher

SAGE Publications

Publication Date

07/2020

Volume

30

Pages

1275 - 1286