{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,23]],"date-time":"2026-09-23T14:04:25Z","timestamp":1790172265247,"version":"4.1.0"},"reference-count":34,"publisher":"Wiley","issue":"3","license":[{"start":{"date-parts":[[2026,7,15]],"date-time":"2026-07-15T00:00:00Z","timestamp":1784073600000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"},{"start":{"date-parts":[[2026,7,15]],"date-time":"2026-07-15T00:00:00Z","timestamp":1784073600000},"content-version":"tdm","delay-in-days":0,"URL":"http:\/\/doi.wiley.com\/10.1002\/tdm_license_1.1"}],"funder":[{"DOI":"10.13039\/501100000272","name":"National Institute for Health and Care Research","doi-asserted-by":"publisher","award":["NIHR300774"],"award-info":[{"award-number":["NIHR300774"]}],"id":[{"id":"10.13039\/501100000272","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["bpspsychub.onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["British J Health Psychol"],"published-print":{"date-parts":[[2026,9]]},"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Objectives<\/jats:title>\n                    <jats:p>Congenital melanocytic naevi (CMN) and arteriovenous malformations (AVM) are rare, severe and incurable birthmark conditions associated with lifelong visible difference and complex medical needs. Despite the importance of early health care experiences for parental and child adjustment in general, these remain unexplored in this context. This study aimed to explore parental experiences of raising a child with rare severe birthmarks, the role of specialist care in parental adjustment, and to develop recommendations for clinical care.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Design<\/jats:title>\n                    <jats:p>Reflective thematic analysis (RTA) was used to analyse semi\u2010structured narrative\u2010style interviews conducted with 23 parents of children aged \u226412\u2009years recruited sequentially from a specialized NHSE Rare Disease Collaborative Network (RDCN) outpatient clinic in London, UK.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>Interviews were conducted virtually via telephone or Zoom and analysed using RTA using NVivo software (version 13). Reflexivity was achieved through the keeping of a reflexive journal and debriefing with the research team.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>Through RTA, three themes were generated which highlight the challenges faced by parents of children with rare birthmarks. Firstly, parents' experiences before coming to the first appointment, secondly \u2018learning to belong\u2019 in the health care system and thirdly \u2018making room\u2019 for the condition. These themes and respective subthemes provide new insights into the importance of specialist centres in relation to parental adjustment to rare birthmarks.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>Findings underscore the pivotal role of specialist care in parental adjustment to rare, appearance\u2010altering conditions. Practical care recommendations are presented to support families across care pathways.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1111\/bjhp.70095","type":"journal-article","created":{"date-parts":[[2026,7,16]],"date-time":"2026-07-16T06:00:58Z","timestamp":1784181658000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":0,"title":["Parents' experiences of diagnosis and specialist care of children's rare birthmarks"],"prefix":"10.1111","volume":"31","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-4967-7667","authenticated-orcid":false,"given":"Morgan B.","family":"Zolkwer","sequence":"first","affiliation":[{"name":"Mosaicism and Precision Medicine Laboratory The Francis Crick Institute  London UK"},{"name":"Genetics and Genomic Medicine, UCL Great Ormond Street Institute of Child Health  London UK"},{"name":"Great Ormond Street Hospital Paediatric Dermatology  London UK"},{"name":"Centre for Appearance Research University of the West of England  Bristol UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Satyamaanasa","family":"Polubothu","sequence":"additional","affiliation":[{"name":"Genetics and Genomic Medicine, UCL Great Ormond Street Institute of Child Health  London UK"},{"name":"Great Ormond Street Hospital Paediatric Dermatology  London UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Veronica A.","family":"Kinsler","sequence":"additional","affiliation":[{"name":"Mosaicism and Precision Medicine Laboratory The Francis Crick Institute  London UK"},{"name":"Genetics and Genomic Medicine, UCL Great Ormond Street Institute of Child Health  London UK"},{"name":"Great Ormond Street Hospital Paediatric Dermatology  London UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Amy","family":"Slater","sequence":"additional","affiliation":[{"name":"Centre for Appearance Research University of the West of England  Bristol UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-8263-0679","authenticated-orcid":false,"given":"Ella","family":"Guest","sequence":"additional","affiliation":[{"name":"Centre for Appearance Research University of the West of England  Bristol UK"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2026,7,15]]},"reference":[{"key":"e_1_2_10_2_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.bodyim.2016.10.001"},{"key":"e_1_2_10_3_1","doi-asserted-by":"publisher","DOI":"10.1172\/JCI98589"},{"key":"e_1_2_10_4_1","doi-asserted-by":"publisher","DOI":"10.1186\/s13023\u2010022\u201002358\u2010x"},{"key":"e_1_2_10_5_1","doi-asserted-by":"publisher","DOI":"10.1111\/cch.12504"},{"key":"e_1_2_10_6_1","doi-asserted-by":"publisher","DOI":"10.1191\/1478088706qp063oa"},{"key":"e_1_2_10_7_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jpeds.2019.10.068"},{"key":"e_1_2_10_8_1","doi-asserted-by":"publisher","DOI":"10.1111\/bjhp.12763"},{"key":"e_1_2_10_9_1","doi-asserted-by":"publisher","DOI":"10.1177\/1055665619869146"},{"key":"e_1_2_10_10_1","unstructured":"Gunter D. &Duke G.(2018).A literature review of twenty\u2010nine papers that investigated uncertainty in families dealing with childhood cancer found robust support for increased levels of stress and uncertainty in parents prior to their child's diagnosis especially in cases where the cause was not yet known."},{"key":"e_1_2_10_11_1","doi-asserted-by":"publisher","DOI":"10.1177\/1359104520972457"},{"key":"e_1_2_10_12_1","doi-asserted-by":"publisher","DOI":"10.1093\/jpepsy\/jsv048"},{"key":"e_1_2_10_13_1","doi-asserted-by":"publisher","DOI":"10.1111\/bjd.17924"},{"key":"e_1_2_10_14_1","doi-asserted-by":"publisher","DOI":"10.1038\/jid.2013.70"},{"key":"e_1_2_10_15_1","doi-asserted-by":"publisher","DOI":"10.1597\/05\u2010117"},{"key":"e_1_2_10_16_1","doi-asserted-by":"publisher","DOI":"10.1037\/a0018114"},{"key":"e_1_2_10_17_1","doi-asserted-by":"publisher","DOI":"10.1142\/S0192415X17500033"},{"key":"e_1_2_10_18_1","doi-asserted-by":"publisher","DOI":"10.1111\/ecc.13406"},{"key":"e_1_2_10_19_1","doi-asserted-by":"publisher","DOI":"10.1111\/ced.14990"},{"key":"e_1_2_10_20_1","unstructured":"Lumivero. 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