In Their Own Words: Creating Connections Through Narrative Medicine

People with Parkinson's disease (PwP) often report feeling unheard or hurried through clinical visits, without the opportunity to share their unique illness story. Simultaneously, clinicians report increasing dissatisfaction with efficiency pressures that disincentivize active listening and patient-centered communication. This research brief outlines a guided short-form journaling activity, the 55-word story, for PwP to share their stories in a format that can be received by busy clinicians. Three cohorts of 10 to 13 PwP completed the program, with virtual meetings over four consecutive weeks, led by a facilitator trained in both narrative medicine and movement disorders. By the end of each cohort, nearly all (31/35 participants, 88.6%) reported an improved relationship with their neurologist, communication skills, clarity about goals and values, and/or increased community with other PwP. Further, 32/35 (91.4%) reported an intention to share their 55-word story with health providers, friends, or family. An online guided journaling activity was feasible, enjoyable, and successful at improving the well-being of PwP. This model can be used at other institutions or with other chronic illnesses.