Abstract
Life with chronic disease and chronic care is hard and people who live in disadvantage may lack the freedom to prioritise their care because of increased competing demands. This paper proposes that shifting the goals of chronic care from self-management support to a shared-management approach can help improve wellbeing and health outcomes across social groups. This work draws on a qualitative exploration of the lived experience of chronic disease and an applied ethical analysis of the reproduction of disadvantages within chronic care. The qualitative results further specify respectful and collaborative patient-healthcare professional relationships; autonomy-supportive interventions; and continuity of care to face the complexity of chronicity in a phenomenological sense-a paradoxical experience of long duration that comprises the disease's presence in the absence of its manifestation. The ethical analysis draws on performativity; autonomy and decision-making; and responsibility, which constitute the theoretical foundation for shared-management. This approach contributes to advance current normative thinking for health justice and outlines practical steps for its clinical implementation in the delivery of chronic care.
Published Version
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