Approaches to Photoprotection and Normalization in Highly Adherent Families of Children With Xeroderma Pigmentosum in the United Kingdom
Bibliographic Data
| ID | 4691775 |
|---|---|
| Authors | Rebecca Anderson (0000-0001-8925-7002, King’s College London, London, United Kingdom), Rebecca Anderson‐Kittow (0000-0002-7095-8914, King's College London), Jessica Walburn (0000-0001-7396-0182, King’s College London, London, United Kingdom), Myfanwy Morgan (0000-0001-5532-8941, King’s College London, London, United Kingdom, corresponding author) |
| Year | 2020 |
| Volume | 30 |
| Issue | 8 |
| Pages | 1275-1286 |
| Publication date | 2020-07-01 |
| Peer Reviewed | Yes |
| Open Access | Yes |
| Type | ARTICLE |
| Venue | Qualitative Health Research (JOURNAL) |
| Journal identifiers | ISSN: 1049-7323 • E-ISSN: 1552-7557 |
| Publisher | SAGE Publications Inc (PUBLISHER) |
| DOI | 10.1177/1049732319826561 |
| PMID | 30741094 |
| OpenAlex | W2913465312 |
| Language | EN |
| Citations received | 2 |
| References cited | 33 |
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
Biology · DNA repair · Family medicine · Normality · Photoprotection · Psychiatry · Xeroderma pigmentosum · DNA Repair Mechanisms · Medicine · Psychology · Genetics
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| Unique citing works | 2 |
|---|---|
| Citations per year | 1 |
| Citation span | 2024 - 2024 (1) |
| Citation velocity | recent |
| Highly cited | No |
| Citation types | Neutral: 2 |