{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,2,8]],"date-time":"2026-02-08T04:13:36Z","timestamp":1770524016475,"version":"3.49.0"},"reference-count":47,"publisher":"Elsevier BV","issue":"4","license":[{"start":{"date-parts":[[2016,8,1]],"date-time":"2016-08-01T00:00:00Z","timestamp":1470009600000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/www.elsevier.com\/tdm\/userlicense\/1.0\/"},{"start":{"date-parts":[[2016,8,1]],"date-time":"2016-08-01T00:00:00Z","timestamp":1470009600000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/www.elsevier.com\/legal\/tdmrep-license"}],"content-domain":{"domain":["clinicalkey.com","clinicalkey.com.au","clinicalkey.es","clinicalkey.fr","clinicalkey.jp","jpagonline.org","elsevier.com","sciencedirect.com"],"crossmark-restriction":true},"short-container-title":["Journal of Pediatric and Adolescent Gynecology"],"published-print":{"date-parts":[[2016,8]]},"DOI":"10.1016\/j.jpag.2015.11.009","type":"journal-article","created":{"date-parts":[[2015,11,27]],"date-time":"2015-11-27T13:49:48Z","timestamp":1448632188000},"page":"338-343","update-policy":"https:\/\/doi.org\/10.1016\/elsevier_cm_policy","source":"Crossref","is-referenced-by-count":31,"title":["\u201cIt's Part of Me, Not All of Me\u201d: Young Women's Experiences of Receiving a Diagnosis Related to Diverse Sex Development"],"prefix":"10.1016","volume":"29","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-7490-3921","authenticated-orcid":false,"given":"Tove","family":"Lundberg","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Katrina","family":"Roen","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Angelica L.","family":"Hirschberg","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Louise","family":"Fris\u00e9n","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"78","reference":[{"key":"10.1016\/j.jpag.2015.11.009_bib1","doi-asserted-by":"crossref","first-page":"148","DOI":"10.1016\/j.jpurol.2006.03.004","article-title":"Consensus statement on management of intersex disorders","volume":"2","author":"Hughes","year":"2006","journal-title":"J Pediatr Urol"},{"key":"10.1016\/j.jpag.2015.11.009_bib2","doi-asserted-by":"crossref","first-page":"e488","DOI":"10.1542\/peds.2006-0738","volume":"118","author":"Lee","year":"2006","journal-title":"Pediatrics"},{"key":"10.1016\/j.jpag.2015.11.009_bib3","first-page":"83","article-title":"A values-driven and evidence-based health care psychology for diverse sex development","volume":"5","author":"Liao","year":"2014","journal-title":"Psychol Sex"},{"key":"10.1016\/j.jpag.2015.11.009_bib4","doi-asserted-by":"crossref","first-page":"172","DOI":"10.1016\/j.maturitas.2009.12.004","article-title":"Long-term health issues of women with XY karyotype","volume":"65","author":"Berra","year":"2010","journal-title":"Maturitas"},{"key":"10.1016\/j.jpag.2015.11.009_bib5","doi-asserted-by":"crossref","first-page":"105","DOI":"10.1016\/j.fertnstert.2009.02.087","article-title":"Care of women with XY karyotype: a clinical practice guideline","volume":"94","author":"Jorgensen","year":"2010","journal-title":"Fertil Steril"},{"key":"10.1016\/j.jpag.2015.11.009_bib6","doi-asserted-by":"crossref","first-page":"81","DOI":"10.1348\/135910704322778740","article-title":"Fear of devaluation: understanding the experience of intersexed women with androgen insensitivity syndrome","volume":"9","author":"Alderson","year":"2004","journal-title":"Br J Health Psychol"},{"key":"10.1016\/j.jpag.2015.11.009_bib7","series-title":"Girls\/women in inverted commas \u2013 facing \u2018reality\u2019 as an XY-female","author":"Simmonds","year":"2012"},{"key":"10.1016\/j.jpag.2015.11.009_bib8","series-title":"Fixing Sex: Intersex, Medical Authority, and Lived Experience","author":"Karkazis","year":"2008"},{"key":"10.1016\/j.jpag.2015.11.009_bib9","first-page":"213","article-title":"Disorders of sex development-when and how to tell the patient","volume":"8","author":"Austin","year":"2011","journal-title":"Pediatr Endocrinol Rev"},{"key":"10.1016\/j.jpag.2015.11.009_bib10","doi-asserted-by":"crossref","first-page":"628","DOI":"10.1136\/bmj.331.7517.628","article-title":"Revealing the diagnosis of androgen insensitivity syndrome in adulthood","volume":"331","author":"Conn","year":"2005","journal-title":"BMJ"},{"key":"10.1016\/j.jpag.2015.11.009_bib11","series-title":"Intersex and Identity: The Contested Self","author":"Preves","year":"2003"},{"key":"10.1016\/j.jpag.2015.11.009_bib12","series-title":"Intersex in the Age of Ethics","author":"Dreger","year":"1999"},{"key":"10.1016\/j.jpag.2015.11.009_bib13","doi-asserted-by":"crossref","first-page":"1775","DOI":"10.1111\/j.1365-2702.2008.02710.x","article-title":"The experiences of people with an intersex condition: a journey from silence to voice","volume":"18","author":"MacKenzie","year":"2009","journal-title":"J Clin Nurs"},{"key":"10.1016\/j.jpag.2015.11.009_bib14","doi-asserted-by":"crossref","first-page":"428","DOI":"10.1080\/07399330902785380","article-title":"Being an XY female: an analysis of accounts from the Web site of the Androgen Insensitivity Syndrome Support Group","volume":"30","author":"Garrett","year":"2009","journal-title":"Health Care Women Int"},{"key":"10.1016\/j.jpag.2015.11.009_bib15","doi-asserted-by":"crossref","first-page":"573","DOI":"10.1177\/1359105305053431","article-title":"Adult genital surgery for intersex: a solution to what problem?","volume":"10","author":"Boyle","year":"2005","journal-title":"J Health Psychol"},{"key":"10.1016\/j.jpag.2015.11.009_bib16","doi-asserted-by":"crossref","first-page":"335","DOI":"10.1016\/j.beem.2010.01.006","article-title":"Holistic management of DSD","volume":"24","author":"Brain","year":"2010","journal-title":"Best Pract Res Clin Endocrinol Metab"},{"key":"10.1016\/j.jpag.2015.11.009_bib17","doi-asserted-by":"crossref","first-page":"229","DOI":"10.1080\/0264683031000154971","article-title":"Learning to assist women born with atypical genitalia: journey through ignorance, taboo and dilemma","volume":"21","author":"Liao","year":"2003","journal-title":"J Reprod Infant Psychol"},{"key":"10.1016\/j.jpag.2015.11.009_bib18","first-page":"9","article-title":"Androgen insensitivity syndrome (AIS): emotional reactions of parents and adult patients to the clinical diagnosis of AIS and its confirmation by androgen receptor gene mutation analysis","volume":"53","author":"Slijper","year":"2000","journal-title":"Horm Res"},{"key":"10.1016\/j.jpag.2015.11.009_bib19","doi-asserted-by":"crossref","first-page":"618","DOI":"10.1136\/adc.2009.163840","article-title":"Consequences of the Chicago consensus on disorders of sex development (DSD): current practices in Europe","volume":"8","author":"Pasterski","year":"2010","journal-title":"Arch Dis Child"},{"key":"10.1016\/j.jpag.2015.11.009_bib20","doi-asserted-by":"crossref","first-page":"193","DOI":"10.1111\/j.1471-0528.2009.02385.x","article-title":"Service users' experiences of obtaining and giving information about disorders of sex development","volume":"117","author":"Liao","year":"2010","journal-title":"BJOG"},{"key":"10.1016\/j.jpag.2015.11.009_bib21","first-page":"44","article-title":"Emotionally and cognitively informed consent for clinical care for differences of sex development","volume":"5","author":"Tamar-Mattis","year":"2014","journal-title":"Psychol Sex"},{"key":"10.1016\/j.jpag.2015.11.009_bib22","doi-asserted-by":"crossref","first-page":"e32","DOI":"10.1542\/peds.110.3.e32","article-title":"46,XY intersex individuals: phenotypic and etiologic classification, knowledge of condition, and satisfaction with knowledge in adulthood","volume":"110","author":"Migeon","year":"2002","journal-title":"Pediatrics"},{"key":"10.1016\/j.jpag.2015.11.009_bib23","first-page":"653624","article-title":"A qualitative study of communication between young women with disorders of sex development and health professionals","author":"Sanders","year":"2015","journal-title":"Adv Nurs"},{"key":"10.1016\/j.jpag.2015.11.009_bib24","doi-asserted-by":"crossref","first-page":"25","DOI":"10.1016\/j.ogc.2009.02.001","article-title":"Disorders of sexual development","volume":"36","author":"Allen","year":"2009","journal-title":"Obstet Gynecol Clin North Am"},{"key":"10.1016\/j.jpag.2015.11.009_bib25","series-title":"Disorders of Sex Development: A Guide For Parents and Physicians","author":"Wisniewski","year":"2012"},{"key":"10.1016\/j.jpag.2015.11.009_bib26","doi-asserted-by":"crossref","first-page":"113","DOI":"10.1159\/000363636","article-title":"Improving the communication of healthcare professionals with affected children and adolescents","volume":"27","author":"Nordenstrom","year":"2014","journal-title":"Endocr Dev"},{"key":"10.1016\/j.jpag.2015.11.009_bib27","doi-asserted-by":"crossref","first-page":"138","DOI":"10.1159\/000363639","article-title":"Past experiences of adults with disorders of sex development","volume":"27","author":"GrApSIA","year":"2014","journal-title":"Endocr Dev"},{"key":"10.1016\/j.jpag.2015.11.009_bib28","doi-asserted-by":"crossref","first-page":"384","DOI":"10.1016\/j.pec.2010.12.021","article-title":"Qualitative research on health communication: what can it contribute?","volume":"82","author":"Britten","year":"2011","journal-title":"Patient Educ Couns"},{"key":"10.1016\/j.jpag.2015.11.009_bib29","doi-asserted-by":"crossref","first-page":"53","DOI":"10.1093\/jpepsy\/25.1.53","article-title":"Commentary: rethinking our interventions in pediatric chronic pain and treatment research","volume":"25","author":"Clay","year":"2000","journal-title":"J Pediatr Psychol"},{"key":"10.1016\/j.jpag.2015.11.009_bib30","doi-asserted-by":"crossref","first-page":"397","DOI":"10.1016\/S0140-6736(01)05548-9","article-title":"The art and science of clinical knowledge: evidence beyond measures and numbers","volume":"358","author":"Malterud","year":"2001","journal-title":"Lancet"},{"key":"10.1016\/j.jpag.2015.11.009_bib31","doi-asserted-by":"crossref","first-page":"191520","DOI":"10.1186\/1687-9856-2010-191520","article-title":"Congenital adrenal hyperplasia: classification of studies employing psychological endpoints","author":"Stout","year":"2010","journal-title":"Int J Pediatr Endocrinol"},{"key":"10.1016\/j.jpag.2015.11.009_bib32","doi-asserted-by":"crossref","first-page":"266","DOI":"10.1016\/j.jpag.2013.11.011","article-title":"Experiences of surgical continence management approaches for cloacal anomalies: a qualitative analysis based on 6 women","volume":"27","author":"Liao","year":"2014","journal-title":"J Pediatr Adolesc Gynecol"},{"key":"10.1016\/j.jpag.2015.11.009_bib33","doi-asserted-by":"crossref","first-page":"27","DOI":"10.1016\/S0738-3991(03)00076-4","article-title":"Communication in context: new directions in communication research","volume":"50","author":"Bensing","year":"2003","journal-title":"Patient Educ Couns"},{"key":"10.1016\/j.jpag.2015.11.009_bib34","series-title":"Introducing Qualitative Research in Psychology","author":"Willig","year":"2013"},{"key":"10.1016\/j.jpag.2015.11.009_bib35","series-title":"Introduction to Qualitative Methods in Psychology","year":"2013"},{"key":"10.1016\/j.jpag.2015.11.009_bib36","series-title":"Qualitative Psychology: A\u00a0Practical Guide to Research Methods","first-page":"111","article-title":"Narrative psychology","author":"Murray","year":"2008"},{"key":"10.1016\/j.jpag.2015.11.009_bib37","doi-asserted-by":"crossref","first-page":"119","DOI":"10.1016\/j.srhc.2011.05.003","article-title":"Swedish adolescents' experiences of educational sessions at youth clinics","volume":"2","author":"K\u00e5n\u00e5hols","year":"2011","journal-title":"Sex Reprod Healthc"},{"key":"10.1016\/j.jpag.2015.11.009_bib38","doi-asserted-by":"crossref","first-page":"260","DOI":"10.1016\/j.pec.2012.07.012","article-title":"Health dialogues between pupils and school nurses: a description of the verbal interaction","volume":"89","author":"Gols\u00e4ter","year":"2012","journal-title":"Patient Educ Couns"},{"key":"10.1016\/j.jpag.2015.11.009_bib39","doi-asserted-by":"crossref","first-page":"275","DOI":"10.1177\/1750481315571162","article-title":"Patient-centred discourse in sexual and reproductive health consultations","volume":"9","author":"de Silva Joyce","year":"2015","journal-title":"Discourse Commun"},{"key":"10.1016\/j.jpag.2015.11.009_bib40","doi-asserted-by":"crossref","first-page":"170","DOI":"10.1016\/j.pec.2012.01.009","article-title":"Patient-centered care in chronic disease management: a thematic analysis of the literature in family medicine","volume":"88","author":"Hudon","year":"2012","journal-title":"Patient Educ Couns"},{"key":"10.1016\/j.jpag.2015.11.009_bib41","doi-asserted-by":"crossref","first-page":"1784","DOI":"10.1200\/JCO.2011.38.1384","article-title":"Toward patient-centered cancer care: patient perceptions of problematic events, impact, and response","volume":"30","author":"Mazor","year":"2012","journal-title":"J Clin Oncol"},{"key":"10.1016\/j.jpag.2015.11.009_bib42","doi-asserted-by":"crossref","first-page":"83","DOI":"10.1001\/archinte.163.1.83","article-title":"Closing the loop: physician communication with diabetic patients who have low health literacy","volume":"163","author":"Schillinger","year":"2003","journal-title":"Arch Intern Med"},{"key":"10.1016\/j.jpag.2015.11.009_bib43","doi-asserted-by":"crossref","first-page":"271","DOI":"10.1037\/0003-066X.61.4.271","article-title":"APA Presidential Task Force on Evidence-Based Practice: Evidence-based practice in psychology","volume":"61","year":"2006","journal-title":"Am Psychol"},{"key":"10.1016\/j.jpag.2015.11.009_bib44","first-page":"449","article-title":"Two epistemological frameworks in psychology: the typological and the variational modes of thinking","volume":"5","author":"Valsiner","year":"1984","journal-title":"J Mind Behav"},{"key":"10.1016\/j.jpag.2015.11.009_bib45","series-title":"Guidelines and Literature Review for Psychologists Working Therapeutically with Sexual and Gender Minority Clients","article-title":"Diversity of sex development","author":"Liao","year":"2012"},{"key":"10.1016\/j.jpag.2015.11.009_bib46","series-title":"Designing Qualitative Research","author":"Flick","year":"2007"},{"key":"10.1016\/j.jpag.2015.11.009_bib47","doi-asserted-by":"crossref","first-page":"2072","DOI":"10.1016\/j.socscimed.2008.09.050","article-title":"The evolving concept of health literacy","volume":"67","author":"Nutbeam","year":"2008","journal-title":"Soc Sci Med"}],"container-title":["Journal of Pediatric and Adolescent Gynecology"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/api.elsevier.com\/content\/article\/PII:S1083318815003824?httpAccept=text\/xml","content-type":"text\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/api.elsevier.com\/content\/article\/PII:S1083318815003824?httpAccept=text\/plain","content-type":"text\/plain","content-version":"vor","intended-application":"text-mining"}],"deposited":{"date-parts":[[2025,10,21]],"date-time":"2025-10-21T13:42:28Z","timestamp":1761054148000},"score":1,"resource":{"primary":{"URL":"https:\/\/linkinghub.elsevier.com\/retrieve\/pii\/S1083318815003824"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2016,8]]},"references-count":47,"journal-issue":{"issue":"4","published-print":{"date-parts":[[2016,8]]}},"alternative-id":["S1083318815003824"],"URL":"https:\/\/doi.org\/10.1016\/j.jpag.2015.11.009","relation":{},"ISSN":["1083-3188"],"issn-type":[{"value":"1083-3188","type":"print"}],"subject":[],"published":{"date-parts":[[2016,8]]},"assertion":[{"value":"Elsevier","name":"publisher","label":"This article is maintained by"},{"value":"\u201cIt's Part of Me, Not All of Me\u201d: Young Women's Experiences of Receiving a Diagnosis Related to Diverse Sex Development","name":"articletitle","label":"Article Title"},{"value":"Journal of Pediatric and Adolescent Gynecology","name":"journaltitle","label":"Journal Title"},{"value":"https:\/\/doi.org\/10.1016\/j.jpag.2015.11.009","name":"articlelink","label":"CrossRef DOI link to publisher maintained version"},{"value":"article","name":"content_type","label":"Content Type"},{"value":"\u00a9 2016 North American Society for Pediatric and Adolescent Gynecology. Published by Elsevier Inc.","name":"copyright","label":"Copyright"}]}}