The Narrative-Based Evolution of a Stakeholder-Engaged Research Team

Abstract

Millions of people worldwide have experienced abrupt and traumatic disruption in the flow of their personal life story as a result of stroke and the onset of aphasia. For each one who survives and embarks on the journey toward recovery, their unique and evolving narrative yields gems of wisdom borne of the experience. This wisdom is shared with others through interpersonal narrative exchange and engagement, which foster biographical coherence and provide sources of hope to others on the path toward a productive and fulfilling life. This case study illustrates how a biography-based approach to stakeholder-engaged research merges personal stories in three ways. First, the case illustrates how the personal and professional stories of the candidate research team members merged to form the team through networking over time. Second, the biography-based approach led the team to identify the written personal accounts of 259 people living with aphasia as the raw data set for their research, with the intended goal of mining gems of practical wisdom from these written biographical works. Third, the case illustrates how the biography-based approach draws on the personal stories of in-hospital experiences of research team members with aphasia to prospectively hone the initial research focus. Specifically, the team will tap the collective voice within the written accounts to evaluate the in-hospital experiences of people with aphasia. The ultimate goal will be to catalyze participatory action, in collaboration with transdisciplinary health care providers, to advance responsive, person-centered health care. The authors address challenges and priorities in stakeholder-engaged research team development, the importance of honing a research focus, and the identification of research dissemination venues. Oral and written accounts of life with aphasia offer a timeless and potentially rich source of wisdom that can be tapped through the process of stakeholder-engaged research.