{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,10]],"date-time":"2026-07-10T01:48:52Z","timestamp":1783648132645,"version":"3.55.0"},"reference-count":34,"publisher":"Wiley","issue":"2","license":[{"start":{"date-parts":[[2023,6,26]],"date-time":"2023-06-26T00:00:00Z","timestamp":1687737600000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Journal of Genetic Counseling"],"published-print":{"date-parts":[[2024,4]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:p>Targeted screening programs for individuals with an increased risk for cancer have become increasingly available. Patients with multiple endocrine neoplasia (MEN), rare genetic conditions associated with the development of tumors in the endocrine glands, undergo intensive surveillance from an early age. Quantitative research has shown that patients with MEN experience fear of disease occurrence in themselves and their family members. However, little is known about the role that intensive, lifelong screening plays in the lives of individuals. This study investigates the lived experiences of patients with MEN undergoing regular tumor screening through an interpretative phenomenological analysis of interviews with 12 patients with MEN1, MEN2A, or MEN2B syndrome. Four experiential group themes are identified: <jats:italic>coming to the foreground\/fading into the background<\/jats:italic>, <jats:italic>relating to uncertainty<\/jats:italic>, <jats:italic>experiencing control<\/jats:italic>, and <jats:italic>familial context<\/jats:italic>. Screening is characterized as an ambiguous experience that brings MEN to the foreground and may both exacerbate MEN\u2010related uncertainty as well as provide a sense of control over the disease. The experience of undergoing screening is strongly influenced by the familial context, as participants care for and are cared for by family members and understand their disease through familial experiences. Good care according to patients with MEN includes providing family\u2010centered care, addressing the impact on daily functioning and the meaning of illness, support in the interpretation of physical complaints, facilitation of patient experiences of control, and careful attunement to patient needs within a good doctor\u2013patient relationship.<\/jats:p>","DOI":"10.1002\/jgc4.1739","type":"journal-article","created":{"date-parts":[[2023,6,26]],"date-time":"2023-06-26T09:41:21Z","timestamp":1687772481000},"page":"402-412","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":2,"title":["Lived experiences of undergoing regular tumor screening in patients with multiple endocrine neoplasia types 1 and 2 (<scp>MEN1<\/scp>\/<scp>MEN2<\/scp>)"],"prefix":"10.1002","volume":"33","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-0453-2608","authenticated-orcid":false,"given":"Mirthe Jasmijn","family":"Klein\u00a0Haneveld","sequence":"first","affiliation":[{"name":"Department of Endocrine Oncology University Medical Center Utrecht  Utrecht The Netherlands"},{"name":"Emma Children's Hospital, Amsterdam UMC University of Amsterdam  Amsterdam The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-5841-8344","authenticated-orcid":false,"given":"Gerlof Dirk","family":"Valk","sequence":"additional","affiliation":[{"name":"Department of Endocrine Oncology University Medical Center Utrecht  Utrecht The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Rachel Sara","family":"van Leeuwaarde","sequence":"additional","affiliation":[{"name":"Department of Endocrine Oncology University Medical Center Utrecht  Utrecht The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2023,6,26]]},"reference":[{"key":"e_1_2_12_2_1","doi-asserted-by":"publisher","DOI":"10.1111\/jppi.12224"},{"key":"e_1_2_12_3_1","doi-asserted-by":"publisher","DOI":"10.1210\/endrev\/bnaa031"},{"issue":"7","key":"e_1_2_12_4_1","first-page":"178","article-title":"Bodily doubt","volume":"20","author":"Carel H.","year":"2013","journal-title":"Journal of Consciousness Studies"},{"key":"e_1_2_12_5_1","doi-asserted-by":"publisher","DOI":"10.1210\/js.2018\u201000371"},{"key":"e_1_2_12_6_1","doi-asserted-by":"publisher","DOI":"10.3389\/fendo.2018.00533"},{"key":"e_1_2_12_7_1","doi-asserted-by":"publisher","DOI":"10.1188\/03.ONF.945\u2010955"},{"key":"e_1_2_12_8_1","doi-asserted-by":"publisher","DOI":"10.1530\/ERC\u201017\u20100335"},{"key":"e_1_2_12_9_1","doi-asserted-by":"publisher","DOI":"10.1177\/1363459310361599"},{"key":"e_1_2_12_10_1","doi-asserted-by":"publisher","DOI":"10.2979\/intjfemappbio.5.1.52"},{"key":"e_1_2_12_11_1","doi-asserted-by":"publisher","DOI":"10.1136\/bmj.g6123"},{"key":"e_1_2_12_12_1","doi-asserted-by":"publisher","DOI":"10.1080\/13648470.2021.1893654"},{"key":"e_1_2_12_13_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1467\u20109566.2012.01510.x"},{"key":"e_1_2_12_14_1","doi-asserted-by":"publisher","DOI":"10.1038\/ejhg.2014.44"},{"key":"e_1_2_12_15_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.ejon.2021.102067"},{"key":"e_1_2_12_16_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.ejon.2014.02.004"},{"key":"e_1_2_12_17_1","doi-asserted-by":"publisher","DOI":"10.1177\/1049732315617444"},{"key":"e_1_2_12_18_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.semcancer.2021.03.035"},{"key":"e_1_2_12_19_1","doi-asserted-by":"publisher","DOI":"10.1111\/jocn.14509"},{"key":"e_1_2_12_20_1","doi-asserted-by":"publisher","DOI":"10.1210\/jendso\/bvac001"},{"key":"e_1_2_12_21_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10897\u2010013\u20109682\u20103"},{"key":"e_1_2_12_22_1","volume-title":"Endotext","author":"Pieterman C. 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