PhD defence S.I. (Sophie) van Dongen

Below is a brief summary of the dissertation:

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 who experience homelessness in the final phase of life, and (2) people with advanced illness (cancer). We addressed the following research questions: which self-management strategies do they apply, and how do they value these?; what are the thoughts of healthcare professionals about (their own roles in) 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 do both these persons themselves and their healthcare professionals perceive this palliative care? A mixture of quantitative and qualitative research methods was used to answer these questions. We conclude that ‘self-management’ during the final phase of life is a very heterogeneous concept, allowing for rather different types of discours (emphasizing social justice, clinical dominance, and individual responsibility, respectively). This heterogeneity hampers innovative healthcare, since it may lead to oversimplification, miscommunication and inconsistent application. We distinguish four leading principles that may contribute to more clarity and unambiguity: self-management (1) extends beyond medical care as such; (2) involves other parties concerned than the patient himself; (3) should be both personalised and context-sensitive; and (4) is unavoidable. Furthermore, our studies showed a inadequate alignment between patients’ own efforts and what professionals offer. We suggest solutions for this mismatch at various levels (individual and relational, healthcare system, societal).