{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,28]],"date-time":"2026-09-28T18:02:43Z","timestamp":1790618563721,"version":"4.1.0"},"reference-count":22,"publisher":"Wiley","issue":"4","license":[{"start":{"date-parts":[[2025,7,20]],"date-time":"2025-07-20T00:00:00Z","timestamp":1752969600000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"},{"start":{"date-parts":[[2025,7,20]],"date-time":"2025-07-20T00:00:00Z","timestamp":1752969600000},"content-version":"tdm","delay-in-days":0,"URL":"http:\/\/doi.wiley.com\/10.1002\/tdm_license_1.1"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["American J of Med Genetics Pt C"],"published-print":{"date-parts":[[2025,12]]},"abstract":"<jats:title>ABSTRACT<\/jats:title>\n                  <jats:p>Myhre syndrome is a rare progressive genetic disorder characterized by hearing loss, cardiovascular and joint problems, neoplasia, and neuropsychologic disabilities. Parents of children with Myhre syndrome and adults themselves face unique challenges, stresses, and fears associated with this diagnosis. Reflective writing in the form of journaling can provide psychosocial support and help individuals cope with this diagnosis. Adult patients and parents whose children were evaluated at the Massachusetts General Hospital Myhre Syndrome Clinic were invited to participate in a three\u2010month journaling intervention. Participation in the study required the completion of a series of surveys prior to starting and upon completion of the study. Data from these surveys were analyzed to assess for change in mental well\u2010being. Eleven individuals participated, six of whom completed the three\u2010month journaling intervention and post\u2010journaling surveys. Three participants indicated that journaling had an impact on their mental well\u2010being, and of these, two planned to continue journaling. However, there was no statistically significant difference in mental well\u2010being scores pre\u2010 and post\u2010journaling intervention. The very small size of the study limits interpretation, but we think it is reasonable to suggest that expressive writing through journaling may be a coping mechanism and means of improving well\u2010being for some individuals in the Myhre syndrome community.<\/jats:p>","DOI":"10.1002\/ajmg.c.32147","type":"journal-article","created":{"date-parts":[[2025,7,21]],"date-time":"2025-07-21T06:48:31Z","timestamp":1753080511000},"page":"269-274","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":1,"title":["Journaling for Parents and Adults With Myhre Syndrome: Using Reflective Writing to Help Cope"],"prefix":"10.1002","volume":"199","author":[{"ORCID":"https:\/\/orcid.org\/0009-0006-6616-2506","authenticated-orcid":false,"given":"Rachel","family":"Gottlieb","sequence":"first","affiliation":[{"name":"MGH Institute of Health Professions Genetic Counseling Program  Boston Massachusetts USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ashley W.","family":"Wong","sequence":"additional","affiliation":[{"name":"MGH Institute of Health Professions Genetic Counseling Program  Boston Massachusetts USA"},{"name":"Medical Genetics, Department of Pediatrics, Mass General for Children  Boston Massachusetts USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Allison L.","family":"Cirino","sequence":"additional","affiliation":[{"name":"MGH Institute of Health Professions Genetic Counseling Program  Boston Massachusetts USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Eleanor R.","family":"Scimone","sequence":"additional","affiliation":[{"name":"Medical Genetics, Department of Pediatrics, Mass General for Children  Boston Massachusetts USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Angela E.","family":"Lin","sequence":"additional","affiliation":[{"name":"Medical Genetics, Department of Pediatrics, Mass General for Children  Boston Massachusetts USA"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2025,7,20]]},"reference":[{"key":"e_1_2_13_2_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.ymgmr.2019.100459"},{"key":"e_1_2_13_3_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365\u20102648.2012.06008.x"},{"key":"e_1_2_13_4_1","doi-asserted-by":"publisher","DOI":"10.1111\/cch.12628"},{"issue":"3","key":"e_1_2_13_5_1","first-page":"6","article-title":"Scrapbooking and Journaling Interventions for Chronic Illness: A Triangulated Investigation of Approaches in the Treatment of PTSD","volume":"83","author":"Davidson J. 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