Self-management and care in the final phase of life: Studies concerning people with advanced illness and people experiencing homelessness

Due to societal changes and increasing pressure on the healthcare system, healthcare is shifting from a paternalistic to a participatory model, in which patients and healthcare professionals share responsibility for health and healthcare. A key concept within this shift is self‑management: the ways in which people deal with the physical, psychosocial and existential consequences of illness and its treatment.
Using a combination of quantitative and qualitative research methods, this thesis examines— from the perspectives of patients and healthcare professionals—what self‑management and care in the final phase of life mean for (1) people with advanced illness (cancer), and (2) people experiencing homelessness.
The findings show that self‑management in the final phase of life is highly personal and is experienced as challenging. Healthcare professionals fulfil a range of support roles, varying from instructive to advisory and collaborative. For people experiencing homelessness, self‑management and palliative care are further complicated by social and structural vulnerabilities, such as multimorbidity, complex living conditions, lack of health insurance, exclusion from regular care, and frequent transfers between care settings.
The thesis further concludes that self‑management in the final phase of life is a heterogeneous concept, allowing for different discourses (social justice, clinical dominance and individual responsibility). This conceptual variation is associated with oversimplification, miscommunication and inconsistent application. Four guiding principles are proposed to promote clarity: self‑management (1) extends beyond medical care, (2) involves others besides the patient, (3) is both person‑specific and context‑dependent, and (4) is inevitable. In addition, the thesis identifies inadequate alignment between what people do themselves and what healthcare professionals offer. By examining the underlying causes, solutions are suggested at multiple levels (individual and relational, healthcare system, and societal).