title: Between disruption and continuity: challenges in maintaining the 'biographical we' when caring for a partner with a severe, chronic illness.
abstract: Chronic obstructive pulmonary disease (COPD) is a progressive illness that changes the lives of patients and their spouses dramatically. The aim of this paper is to show how spouses of COPD patients integrate their tasks as informal carers with their role as spouses and the tensions and challenges involved in this. The study draws on qualitative interviews with spouses of COPD patients, recruited from the patient pool of ambulatory pulmonary services of two hospitals in Oslo, Norway. The spouses described their great efforts to re-establish normality and continuity in their everyday lives. Accomplishing this was a delicate process because they faced several dilemmas in this work. They balanced the need to sustain the independence and integrity of both parties against the need to ensure safety and deal with the progression of the illness. We propose 'biographical we' as a concept that can highlight the great effort spouses put into establishing a sense of continuity in their lives. In times when healthcare policy involves mobilising informal caregiving resources, an awareness of the complexity of caregiving relationships is crucial when developing appropriate support for informal carers.
authors: Health Services Research Unit, Akershus University Hospital, Lørenskog, Norway.|Institute of Health and Society, University of Oslo, Norway.
authors: Gunvor
authors: G
authors: Aasbø
authors: Institute of Health and Society, University of Oslo, Norway.
authors: Kari Nyheim
authors: KN
authors: Solbraekke
authors: Health Services Research Unit, Akershus University Hospital, Lørenskog, Norway.
authors: Ellen
authors: E
authors: Kristvik
authors: Health Services Research Unit, Akershus University Hospital, Lørenskog, Norway.
authors: Anne
authors: A
authors: Werner
mesh_terms: D000368:Aged; D000369:Aged, 80 and over; D017028:Caregivers / Q000523:psychology*; D003266:Continuity of Patient Care; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D009664:Norway; D029424:Pulmonary Disease, Chronic Obstructive / Q000451:nursing* / Q000523:psychology; D036301:Qualitative Research; D018454:Spouses / Q000523:psychology*; D013315:Stress, Psychological / Q000523:psychology
keywords: biographical disruption; chronic illness; embodiment; health policy; informal care; narratives