Reimagining Psychiatric Hospitalization by Using Narrative Analyses and Co-design to Center People’s Experiences

Abstract

Psychiatric hospitalization is a significant and often traumatic event for the person who is hospitalized. Negative experiences of psychiatric hospitalization can erode individuals’ trust in the healthcare system and impact their willingness to seek any care in the future. This distrust in and avoidance of services can, in turn, lead to negative outcomes like worsening mental health and increased likelihood of rehospitalization. In this dissertation, I investigate how a patient-centered informatics approach can be used to address these particular challenges. Although health informatics researchers have used patient-centered care as a model for researching and designing interventions to support increased collaboration between patients and providers, as well as peer support among patients, much of this work is around non-psychiatric care. Work that is related to mental health or psychiatry is often focused on outpatient care, personal health informatics (e.g., self-management), or online communities and peer support, rather than psychiatric hospitalization. To address these critical gaps, my work aims to understand and support the underrepresented population of people with (past, present, and potentially future) experiences of psychiatric hospitalization and aims to validate the embodied knowledge and expertise of this community and their right to be active decisionmakers in their own care. To achieve these goals, I first investigated how people in this community made positive connections with each other on TikTok and provided insights for social media developers and designers to support them. Secondly, I performed an inductive analysis of personal stories of psychiatric hospitalization published in the organization Mad in America’s online Personal Stories section and presented a framework for understanding how information flows in psychiatric facilities, as well as design provocations for health informatics interventions. Finally, I conducted an interview and co-design study with this population, using utopian thinking and speculative design to envision ideal, patient-centered care futures related to psychiatric hospitalization.Together, the findings across all three studies contribute to a further understanding of people’s experiences with psychiatric hospitalization. My research makes several contributions, including: 1. Analyses of rich accounts of people’s experiences with psychiatric hospitalization across multiple mediums, in which I found corroborative themes as well as diverse insights afforded by different mediums of communication. 2. A framework of information flows and pathways based on people’s psychiatric hospitalization narratives, which I used to identify barriers and missed opportunities that hospitalized people and their clinicians encountered when seeking and sharing information in the psychiatric hospital setting. 3. Provocations for patient-centered informatics interventions co-designed with people with experiences of psychiatric hospitalization, who envisioned ideal care futures that included information access inside and outside of psychiatric facilities, patient-defined and -controlled collaborative care, and interventions that may be implemented with traditional institutions or outside of them. This dissertation underscores the need for deeper engagement by the health informatics community in this domain, and demonstrates the necessity of centering the diverse voices, experiences, and expertise of people with experiences of psychiatric hospitalization in the creation of patient-centered futures for mental health care.