Self-management support? Listening to people with complex co-morbidities

Abstract

Objectives The study aimed to explore how people with complex, established co-morbidities experience long-term condition care in New Zealand. Despite the original conception as appropriate for people with early stage disease, in New Zealand the self-management approach dominates the care provided to people at all stages of diagnosis with long-term conditions, something reinforced through particular funding mechanisms. Methods A multiple case study followed the lives of 16 people with several long-term conditions. Data collection comprised two interviews, four weekly contacts with patients over an 18-month period and an interview with their primary health care clinicians. Results This paper reveals a cohort of tired, distracted patients struggling to manage their lives in the face of multiple conflicting challenges, with insufficient energy for the level of personal agency required to deal with the self-management approach. Discussion Participants described aspects of care received, which does meet their needs but sit outside the self-management approach, that resonate with the ideas behind current approaches to palliative care. The potential of an approach to care built upon these ideas is explored as a more compassionate, effective way of meeting the needs of people with advanced, multiple long-term conditions. Further research is warranted to explore the acceptability of such an approach.