Continuity and discontinuity of end-of-life care: A grounded theory study of bereaved family caregivers' experiences.

Background: Approaches to measuring continuity of care are underdeveloped for the end-of-life context, yet important for understanding the quality of end-of-life care. Objectives: Our objective was to develop a grounded theory of continuity of care at end-of-life through the distillation and synthesis of interviews with bereaved family caregivers, which focused on perceptions and experiences of continuity of care at end-of-life. Design: This qualitative study is phase III of a four-phase mixed-methods sequential explanatory study with the aim of determining which aspects of continuity of care matter most to patients and family caregivers and, accordingly, to develop a novel continuity of care index. Methods: Family caregivers completed one 60-min audio-recorded semi-structured virtual interview. Interview questions explored perceptions and experiences through four categories of questions: Patients' end-of-life experiences, family caregivers' desires for end-of-life care, family caregivers' perceptions of prior quantitative findings, and patients' and family caregivers' experiences of continuity of care at end-of-life. Results: Twenty-one family caregivers completed interviews; 33% were aged 19-44, 90% identified as women, 85% lived in urban settings, and 19% identified as a visible minority. Our theory focuses on patterns of continuity and discontinuity of care at end-of-life. Following Corbin and Strauss' grounded theory method, we identified causes, contextual/intervening conditions, strategies, and consequences. Causes included health-human resource supply and system integration; conditions included tension between preferences and system capacity, and personal resources. Strategies involved aligning care with cultural or religious considerations, identifying a single point of contact, and delivering information appropriately. Consequences included patients and caregivers feeling educated and prepared, a comprehensive approach to care, and the provision of high-quality, consistent care. Conclusion: Combined with prior work, these findings will inform a continuity index for use as a system-level end-of-life care indicator.