{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,2,11]],"date-time":"2026-02-11T19:34:36Z","timestamp":1770838476861,"version":"3.50.1"},"reference-count":58,"publisher":"Wiley","issue":"5","license":[{"start":{"date-parts":[[2019,8,5]],"date-time":"2019-08-05T00:00:00Z","timestamp":1564963200000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Journal of Genetic Counseling"],"published-print":{"date-parts":[[2019,10]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:p>Family communication about genetic information enables informed medical and reproductive decision\u2013making. The literature suggests that a significant proportion of genetically at\u2010risk family members remain uninformed about genetic risk information as a result of non\u2010disclosure. This study explored the experiences of New Zealand families communicating about a diagnosis of type 1 myotonic dystrophy (DM1). Eligible individuals were identified and recruited from the New Zealand (NZ) MD Prev study, a nationwide study which aimed to determine the prevalence, impact, and costs of genetic muscle disorders across the lifespan. Twelve qualitative semi\u2010structured interviews were conducted with 17 participants. The findings demonstrate diversity among and within families, with several distinct family narratives described. Most participants reported a motivation to tell relatives about their diagnosis to promote autonomy. Women were pivotal throughout communication processes and this was often tied to the concept of maternal responsibility and a desire to promote relatives\u2019 reproductive autonomy. The diagnosis of DM1 and the subsequent family communication decisions altered relationships for many, with both positive and negative impacts described. The findings demonstrate that individuals require time to explore the impact of a diagnosis of DM1 on self, family and intimate partner relationships to anticipate unique communication challenges. Genetic counselors can use these findings to inform their approach to counseling families with DM1. Longitudinal genetic counseling may be beneficial as a way to provide individuals with life stage specific support as they communicate with their relatives about a diagnosis of DM1.<\/jats:p>","DOI":"10.1002\/jgc4.1156","type":"journal-article","created":{"date-parts":[[2019,8,6]],"date-time":"2019-08-06T06:39:23Z","timestamp":1565073563000},"page":"1029-1041","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":7,"title":["Family communication following a diagnosis of myotonic dystrophy: To tell or not to tell?"],"prefix":"10.1002","volume":"28","author":[{"given":"Shelby","family":"Taylor","sequence":"first","affiliation":[{"name":"The Department of Paediatrics The University of Melbourne Melbourne Australia"},{"name":"Murdoch Children\u2019s Research Institute Melbourne Australia"},{"name":"Parkville Familial Cancer Centre and Genomic Medicine Peter MacCallum Cancer Centre and The Royal Melbourne Hospital Melbourne Australia"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Miriam","family":"Rodrigues","sequence":"additional","affiliation":[{"name":"Neurology Auckland District Health Board Auckland New Zealand"},{"name":"Muscular Dystrophy Association of New Zealand Auckland New Zealand"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Gemma","family":"Poke","sequence":"additional","affiliation":[{"name":"Genetic Health Services Wellington New Zealand"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Samantha","family":"Wake","sequence":"additional","affiliation":[{"name":"The Department of Paediatrics The University of Melbourne Melbourne Australia"},{"name":"Murdoch Children\u2019s Research Institute Melbourne Australia"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Alison","family":"McEwen","sequence":"additional","affiliation":[{"name":"University of Technology Sydney Sydney Australia"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"311","published-online":{"date-parts":[[2019,8,5]]},"reference":[{"key":"e_1_2_9_2_1","doi-asserted-by":"publisher","DOI":"10.1136\/jme.2002.001578"},{"key":"e_1_2_9_3_1","doi-asserted-by":"publisher","DOI":"10.1212\/CPJ.0000000000000531"},{"key":"e_1_2_9_4_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.ejogrb.2012.02.020"},{"key":"e_1_2_9_5_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1399-0004.2008.01088.x"},{"key":"e_1_2_9_6_1","doi-asserted-by":"publisher","DOI":"10.1023\/A:1015275022199"},{"key":"e_1_2_9_7_1","volume-title":"Successful qualitative research: A practical guide for beginners","author":"Braun V.","year":"2013"},{"key":"e_1_2_9_8_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.pec.2013.02.001"},{"key":"e_1_2_9_9_1","first-page":"3","volume-title":"Family communication about genetics","author":"Bylund C. 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