Older People Living With Serious Chronic Illness Towards the End of Life: Study Protocol for the Longitudinal Narrative Study of the TRAJECT Project

Chronic illnesses are a leading cause of global disease burden among older people worldwide. For many, death from serious chronic illness in older age is preceded by an extended period of fluctuations in health and well-being, and these end-of-life trajectories can be complex and difficult to predict. Most research on end-of-life trajectories is quantitative, based on structured measurements and focused on creating groups or categories of trajectories. At the same time, there is little research that attempts to gain a deeper understanding of how older people perceive, interpret, and explain the changes in and influences on their health and well-being as they near the end of life, and how these experiences differ. This longitudinal narrative study aims to understand the commonalities, differences, and changes over time in older people’s narratives of their health and well-being towards the end of life. Thirty-six older people (≥70 years old) who are diagnosed with one or several serious chronic illnesses and in deteriorating health will be invited to complete narrative interviews every two months over the course of twelve months. The interviews will be analysed following Riessman’s approach to narrative analysis, studying the content, structure, and performance aspects of the narratives. This study will establish a novel perspective on end-of-life trajectories, uncovering what is shared and what is individually specific in how older people perceive, interpret and explain their changing health and well-being. The study findings will form an important evidence base for strengthening person-centered care in a way that reflects older people’s priorities and experiences in the final stages of life.