Evolving Motivations: Patients’ and Caregivers’ Perceptions About Seeking Myotonic Dystrophy (DM1) and Huntington’s Disease Care

Abstract

Patient-centered care provision is challenging under ideal circumstances; myotonic dystrophy (DM1) and Huntington’s disease (HD) are examples of chronic, progressive health conditions that may challenge its limits. If we can understand how care unfolds in these conditions, health care providers may be better equipped to address patients’ 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 “safe space” 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.