Longing for continuity: A systematic review and thematic synthesis of qualitative research on the experience of older people living with chronic illness towards the end of life

Many older people spend years living with chronic illness before death. However, we lack a comprehensive understanding of how they experience and make sense of this phase of life, as knowledge about this is fragmented across diagnoses, settings, and aspects of the illness experience. This systematic review thematically synthesises qualitative research on self-reported experiences of older people living with chronic illness towards the end of life. We included 31 articles based on primary qualitative research, or mixed-methods research with separate reporting of qualitative data, describing the illness experiences of 464 older people (aged ≥65 or mean age ≥70) living with any chronic illness and nearing the end of life. We developed nine themes spread over personal, relational, and behavioural dimensions of the experience of chronic illness. Older people long to preserve a continuous sense of self, seeking ways to connect their present reality with their past sense of self and the future they envisage. Three themes closely relate to this central notion of longing for continuity: longing for a continuous sense of self, needing familiarity in care, and striving for normalcy in daily activities. Six other themes capture experiences more distantly related to continuity: navigating losses, changing views of the future, feeling isolated, longing for independence while relying on others, preserving hope, and minimising the impact of illness. We conclude that sustaining continuity of self is central to older people's experience of illness at the end of life, emphasising the importance of a comprehensive understanding of their realities and needs.