Kimberly R Myers1,2, Daniel R George1, Xeumei Huang3, Michael D F Goldenberg1, L J Van Scoy1,2,4, Erik Lehman4, Michael J Green1,2. 1. Department of Humanities, Penn State College of Medicine, Hershey, PA. 2. Department of Medicine, Penn State Milton S Hershey Medical Center, Hershey, PA. 3. Departments of Neurology, Neurosurgery, Radiology, Pharmacology, and Kinesiology, Penn State Milton S Hershey Medical Center, PA. 4. Department of Public Health Sciences, Penn State College of Medicine, Hershey, PA.
Abstract
CONTEXT: Parkinson disease (PD) can be physically, emotionally, and financially burdensome. Understanding its impact from the patient's perspective is an important way to sensitize clinicians to the challenges of living with PD. OBJECTIVE: To evaluate whether a book-length graphic memoir (an illness story in comic form) can help clinicians appreciate PD from the patient's perspective. DESIGN: A convergent mixed-methods study of clinicians working in a multidisciplinary movement disorders clinic. Participants read My Degeneration and completed preintervention and post-intervention questionnaires. They also attended a book group discussion. Quantitative findings were compared before and after the intervention, and qualitative data were analyzed for themes. MAIN OUTCOME MEASURES: Clinicians': 1) confidence in understanding patients' experiences with PD, 2) knowledge about PD, and 3) empathy toward patients and families. RESULTS: After reading the book, participants' confidence in understanding patients' experiences with PD increased significantly in the areas of stigma and disease impact on patients and families. Clinical knowledge was unchanged. Qualitative analysis revealed 3 main themes: 1) the book provides a meaningful way for clinicians to learn about the experience of living with PD; 2) the medium of comics engages clinicians in ways different from other mediums; and 3) benefits of the book may extend beyond the clinical team. CONCLUSION: Clinicians who read My Degeneration gained insight into the psychosocial effects of PD on patients and their loved ones. The book helped facilitate deeper understanding of patients' experiences living with PD and fostered greater empathy and self-reflection.
CONTEXT: Parkinson disease (PD) can be physically, emotionally, and financially burdensome. Understanding its impact from the patient's perspective is an important way to sensitize clinicians to the challenges of living with PD. OBJECTIVE: To evaluate whether a book-length graphic memoir (an illness story in comic form) can help clinicians appreciate PD from the patient's perspective. DESIGN: A convergent mixed-methods study of clinicians working in a multidisciplinary movement disorders clinic. Participants read My Degeneration and completed preintervention and post-intervention questionnaires. They also attended a book group discussion. Quantitative findings were compared before and after the intervention, and qualitative data were analyzed for themes. MAIN OUTCOME MEASURES: Clinicians': 1) confidence in understanding patients' experiences with PD, 2) knowledge about PD, and 3) empathy toward patients and families. RESULTS: After reading the book, participants' confidence in understanding patients' experiences with PD increased significantly in the areas of stigma and disease impact on patients and families. Clinical knowledge was unchanged. Qualitative analysis revealed 3 main themes: 1) the book provides a meaningful way for clinicians to learn about the experience of living with PD; 2) the medium of comics engages clinicians in ways different from other mediums; and 3) benefits of the book may extend beyond the clinical team. CONCLUSION: Clinicians who read My Degeneration gained insight into the psychosocial effects of PD on patients and their loved ones. The book helped facilitate deeper understanding of patients' experiences living with PD and fostered greater empathy and self-reflection.