Developing a Life Story Intervention for Older Adults With Dementia or at Risk of Delirium Who Were Hospitalized: Multistage, Stakeholder-Engaged Co-Design Study (Preprint)

Abstract

BACKGROUND Older adults with chronic or acute cognitive impairment, such as dementia or delirium, who are hospitalized face unique barriers to person-centered care and a higher risk for negative outcomes stemming from hospitalizations. There is a need for co-designed interventions adapted for these patients to the hospital setting to improve care and outcomes. Patient life storytelling interventions have demonstrated promise in enhancing person-centered care by improving patient–care team relationships and providing information to enable care tailored to individual needs and values. OBJECTIVE This study aims to engage patients, care partners, and clinical stakeholders in a co-design process to adapt an existing life storytelling model for use with older adults with dementia and at risk of delirium in the acute care hospital setting. METHODS We recruited patients with dementia or at risk of delirium who were hospitalized, their care partners, clinicians, and informaticists. A 3-stage co-design process that used a mixed methods data collection approach including in-depth interviews and surveys was completed. We used content analysis to analyze qualitative data and descriptive statistics to summarize quantitative data. RESULTS In total, 27 stakeholder informants (ie, patients, care partners, and interdisciplinary care team [IDT] members) participated. Stakeholders were unanimously interested in using patient life stories as a tool for hospital care through electronic health record (EHR) integration. Stakeholders shared potential topics for life stories to cover, including social support, information on patients’ key life events, and favorite activities. Participants provided insights into the logistics of integrating life stories into acute care, including interview arrangement, story-sharing methods, and barriers and facilitators. IDT members shared preferences on EHR integration, resulting in 3 co-designed mock-ups of EHR integration options. Stakeholders shared ways to optimize future acceptability and uptake, including engaging with the care team and promoting awareness of life stories, ensuring suitability to the acute environment (eg, distilling information in an easily digestible way), and addressing concerns for patient capacity and privacy (eg, engaging care partners when appropriate). Thoughts on potential impacts of life stories were also elicited, including improving patient- and care partner–IDT member relationships; humanizing patients; increasing clinical team, patient, and caregiver satisfaction; and enabling more specific, tailored care for patients with dementia and at risk of delirium. CONCLUSIONS This study resulted in a co-designed life storytelling intervention for patients with dementia and at risk for delirium in an acute care hospital setting. Stakeholders provided valuable information to ensure future intervention acceptability and uptake, including potential benefits, facilitators, and challenges in the acute care setting.