Use of a Graphic Memoir to Enhance Clinicians' Understanding of and Empathy for Patients with Parkinson Disease.

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.

From Theory to Practice: Measuring end-of-life communication quality using multiple goals theory.

OBJECTIVES: To describe how multiple goals theory can be used as a reliable and valid measure (i.e., coding scheme) of the quality of conversations about end-of-life issues. METHODS: We analyzed conversations from 17 conversations in which 68 participants (mean age=51years) played a game that prompted discussion in response to open-ended questions about end-of-life issues. Conversations (mean duration=91min) were audio-recorded and transcribed. Communication quality was assessed by three coders who assigned numeric scores rating how well individuals accomplished task, relational, and identity goals in the conversation. RESULTS: The coding measure, which results in a quantifiable outcome, yielded strong reliability (intra-class correlation range=0.73-0.89 and Cronbach's alpha range=0.69-0.89 for each of the coded domains) and validity (using multilevel nonlinear modeling, we detected significant variability in scores between games for each of the coded domains, all p-values <0.02). CONCLUSIONS: Our coding scheme provides a theory-based measure of end-of-life conversation quality that is superior to other methods of measuring communication quality. PRACTICE IMPLICATIONS: Our description of the coding method enables researches to adapt and apply this measure to communication interventions in other clinical contexts.