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This study used mixed methods to examine the experience of living with DM, in patients and their close relatives. Thirteen patients and eight next of kin responded completing Quality of Life and Psychological distress questionnaires in this cross\u2010sectional study, and participating in a semi\u2010structured interview. The findings indicate a higher level of anxiety and hopelessness in next of kin compared to patients, while patients were more depressed. Next of kin reported higher physical, but lower emotional quality of life than patients. Qualitative interviews confirmed the questionnaire findings. The findings from this study may be helpful in genetic counseling. Genetic counselors and geneticists should not only be aware of the burden of being a next of kin, but include discussions about opportunities to minimize the burden in families affected with DM. The findings may be of relevance in counseling for other types of neuromuscular disorders.<\/jats:p>","DOI":"10.1007\/s10897-014-9752-1","type":"journal-article","created":{"date-parts":[[2014,8,14]],"date-time":"2014-08-14T22:55:27Z","timestamp":1408056927000},"page":"169-178","update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":19,"title":["Understanding the Experience of Myotonic Dystrophy. 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