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Self-managing and managing self: practical and moral dilemmas in accounts of living with chronic illness

W. Maurice Young Centre for Applied Ethics, University of British Columbia, 235-6356 Agricultural Road, Vancouver, BC Canada V6T 1Z2, atownsen{at}interchange.ubc.ca

Sally Wyke

Alliance for Self-Care Research, Department of Nursing and Midwifery, University of Stirling, Stirling FK9 4LA, UK

Kate Hunt

Medical Research Council, Social and Public Health Sciences Unit, University of Glasgow, 4 Lilybank Gardens, Glasgow G12 8RZ, UK

Background: Patient education self-management programmes draw on sociological understanding of experiencing single chronic illnesses, but health practitioners do not always recognize the tensions and ambiguities permeating individuals' management experiences, particularly for those with multiple morbidity. The aim of this study was to illuminate how people negotiate multiple chronic illness, and everyday life.

Methods: A sample of 23 people in their early 50s was recruited from a community health survey in Scotland. The participants had four or more chronic illnesses and were interviewed twice. The qualitative data that were generated highlighted the impact of illness and associated management strategies, as people attempted to continue familiar lives. Analysis was based on constant comparison and informed by a narrative approach.

Results: People used multiple techniques to manage symptoms and conveyed a moral obligation to manage `well'. However, maintaining valued social roles, coherent identities and a `normal life' were prioritized, sometimes over symptom containment. This led to tensions, and participants faced moral dilemmas as they self-managed.

Discussion: Self-management policies, programmes and healthcare practitioners need to recognize the tensions that people experience as they negotiate symptoms, valued social roles, positive identities, and daily life. Addressing these issues may improve opportunities to support patients in particular contexts, and enhance self-management.

Key Words: Identity • Moral work • Multiple chronic illness • Self-management • Social roles

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