PhD Defense Sophie van Dongen

How do people at the end of life try to stay in control? Or, could do so, ideally? We studied the process of ‘self-management’ by (1) people experiencing homelessness during the final phase of life, and (2) people with advanced illness (cancer). Research questions were: which self-management strategies do they use, and how do they value these?; what are healthcare professionals’ thoughts about self-management?; is assessment by homeless people of their own health, health(care) needs and available health care facilities age-dependent?; how does palliative care during their final phase of life look like, and how is it perceived by both these persons themselves and their healthcare professionals? A mixture of quantitative and qualitative research methods was applied. Conclusion: the heterogeneity of the ‘self-management’ concept during the final phase of life allows for rather different types of discours (emphasizing social justice, clinical dominance, and individual responsibility, respectively) and, therefore, hampers innovative healthcare, since it may lead to oversimplification, miscommunication and inconsistent application. Leading principles that may contribute to more clarity and unambiguity: self-management (1) extends beyond medical care as such; (2) involves besides the person other parties concerned; (3) should be both personalised and context-sensitive; and (4) is unavoidable. Our studies showed an inadequate alignment between patients’ own efforts and what professionals offer. We suggest multi-level solutions for this mismatch (individual and relational, healthcare system, societal).