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If we can understand how care unfolds in these conditions, health care providers may be better equipped to address patients\u2019 needs. Constructivist grounded theory informed data collection and analysis. Fourteen patients with DM1 or HD, and 10 caregivers participated in semistructured interviews. Constant comparative analysis was used to identify themes. Participants attended clinic to seek expert information and social support. Medical management, altruism, and support provided the motivation. However, motivations evolved, with clinic becoming more important for caregivers as patients deteriorated. Clinic was conceptualized as a \u201csafe space\u201d to actively participate in health care and research. In the absence of disease-halting or curative treatments, participants perceived that they derived a therapeutic benefit from seeking care and from engaging in education and advocacy.<\/jats:p>","DOI":"10.1177\/1049732317711901","type":"journal-article","created":{"date-parts":[[2017,6,20]],"date-time":"2017-06-20T02:56:39Z","timestamp":1497927399000},"page":"1727-1737","update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":13,"title":["Evolving Motivations: Patients\u2019 and Caregivers\u2019 Perceptions About Seeking Myotonic Dystrophy (DM1) and Huntington\u2019s Disease Care"],"prefix":"10.1177","volume":"27","author":[{"given":"Kori A.","family":"LaDonna","sequence":"first","affiliation":[{"name":"Centre for Education Research and Innovation, Schulich School of Medicine and Dentistry, Western University, London, Ontario, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Christopher J.","family":"Watling","sequence":"additional","affiliation":[{"name":"Centre for Education Research and Innovation, Schulich School of Medicine and Dentistry, Western University, London, Ontario, Canada"},{"name":"Department of Clinical Neurological Sciences, Schulich School of Medicine and Dentistry, Western University and London Health Sciences Centre, London, Ontario, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Susan L.","family":"Ray","sequence":"additional","affiliation":[{"name":"Arthur Labatt School of Nursing, Faculty of Health Sciences, Western University, London, Ontario, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Christine","family":"Piechowicz","sequence":"additional","affiliation":[{"name":"Department of Clinical Neurological Sciences, Schulich School of Medicine and Dentistry, Western University and London Health Sciences Centre, London, Ontario, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Shannon L.","family":"Venance","sequence":"additional","affiliation":[{"name":"Department of Clinical Neurological Sciences, Schulich School of Medicine and Dentistry, Western University and London Health Sciences Centre, London, Ontario, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"179","published-online":{"date-parts":[[2017,6,19]]},"reference":[{"key":"bibr1-1049732317711901","doi-asserted-by":"publisher","DOI":"10.1016\/j.pec.2006.09.008"},{"key":"bibr2-1049732317711901","doi-asserted-by":"publisher","DOI":"10.1177\/1049732307302665"},{"key":"bibr3-1049732317711901","doi-asserted-by":"publisher","DOI":"10.1056\/NEJMp1200070"},{"key":"bibr4-1049732317711901","doi-asserted-by":"publisher","DOI":"10.1056\/NEJMp1109283"},{"key":"bibr5-1049732317711901","doi-asserted-by":"publisher","DOI":"10.1016\/S0738-3991(99)00087-7"},{"key":"bibr6-1049732317711901","doi-asserted-by":"publisher","DOI":"10.1377\/hlthaff.28.4.w555"},{"key":"bibr7-1049732317711901","doi-asserted-by":"publisher","DOI":"10.1046\/j.1365-2923.1999.00334.x"},{"key":"bibr8-1049732317711901","doi-asserted-by":"publisher","DOI":"10.1016\/j.jana.2007.03.002"},{"key":"bibr9-1049732317711901","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.a.30762"},{"key":"bibr10-1049732317711901","doi-asserted-by":"publisher","DOI":"10.1097\/00004356-200506000-00002"},{"key":"bibr11-1049732317711901","doi-asserted-by":"publisher","DOI":"10.1136\/jmg.37.3.197"},{"key":"bibr12-1049732317711901","volume-title":"Constructing grounded theory: A practical guide through qualitative analysis","author":"Charmaz K.","year":"2006"},{"key":"bibr13-1049732317711901","volume-title":"Constructing grounded theory","author":"Charmaz K.","year":"2014","edition":"2"},{"key":"bibr14-1049732317711901","doi-asserted-by":"publisher","DOI":"10.1002\/j.2048-7940.2009.tb00266.x"},{"key":"bibr15-1049732317711901","doi-asserted-by":"publisher","DOI":"10.1016\/j.ijnurstu.2008.09.009"},{"key":"bibr16-1049732317711901","doi-asserted-by":"publisher","DOI":"10.1186\/1471-2377-11-86"},{"key":"bibr17-1049732317711901","doi-asserted-by":"publisher","DOI":"10.1046\/j.1365-2923.2001.00841.x"},{"key":"bibr18-1049732317711901","doi-asserted-by":"publisher","DOI":"10.1111\/j.1442-2018.2004.00183.x"},{"key":"bibr19-1049732317711901","doi-asserted-by":"publisher","DOI":"10.1093\/brain\/121.8.1557"},{"key":"bibr20-1049732317711901","doi-asserted-by":"publisher","DOI":"10.1001\/archneur.55.5.635"},{"key":"bibr21-1049732317711901","doi-asserted-by":"publisher","DOI":"10.22230\/jripe.2013v3n1a98"},{"key":"bibr22-1049732317711901","doi-asserted-by":"publisher","DOI":"10.1177\/014107680309600704"},{"key":"bibr23-1049732317711901","doi-asserted-by":"publisher","DOI":"10.3138\/ijfab.4.2.79"},{"key":"bibr24-1049732317711901","unstructured":"Foundation M. 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