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Undefined and unpredictable responsibility: a focus group study of the experiences of informal caregiver spouses of patients with severe COPD
Department of Pulmonary and Infectious Diseases, Nordsjællands Hospital, University of Copenhagen, Denmark.
Örebro University, School of Health and Medical Sciences, Örebro University, Sweden. Centre for Assessment of Medical Technology.
Institute of Public Health, University of Copenhagen, Copenhagen, Denmark; The University Hospital Centre for Health Research, Copenhagen University Hospital, Rigshospitalet, København, Denmark.
Section for Nursing, Department of Clinical Medicine and Department of Public Health, Faculty of Health Sciences, Aarhus University, Aarhus, Denmark.
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2016 (English)In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 25, no 3-4, 483-493 p.Article in journal (Refereed) Published
Resource type
Text
Abstract [en]

Aims and objectives: To explore how spouses of patients with severe chronic obstructive pulmonary disease experience their role as informal caregiver.

Background: Informal caregiver spouses are of pivotal importance in the way that patients with chronic obstructive pulmonary disease cope with their daily life, including their opportunity to stay at home and avoid hospitalisations in the last stages of the disease. However, caregiving is associated with increased morbidity and mortality among caregivers. Further understanding of the role as an informal caregiver spouse of patients with severe chronic obstructive pulmonary disease is needed to develop supportive interventions aimed at reducing the caregiver burden.

Design: The study had a qualitative exploratory design. The data collection and analysis were based on framework method. Framework method is a thematic methodology and consists of five key stages: familiarisation, identifying a thematic framework, indexing, charting and mapping & interpretation.

Methods: Three focus groups were conducted in November 2013 with 22 spouses of patients with severe chronic obstructive pulmonary disease.

Results: Undefined and unpredictable responsibility was found to be the overarching theme describing the informal caregiver role. Underlying themes were: being constantly in a state of alertness, social life modified, maintaining normality, ambivalence in the relationship and a willingness to be involved.

Conclusions: The informal caregiver spouses experienced ambiguity about expectations from their private and the health professionals' surroundings. The informal caregiver spouses wanted to provide meaningful care for their partners, but sought knowledge and support from the health professionals.

Relevance to clinical practice: We recommend that nurses take on the responsibility for including the informal caregiver spouses in those aspects of decision-making that involve the common life of the patients and their spouses.

Place, publisher, year, edition, pages
Wiley-Blackwell, 2016. Vol. 25, no 3-4, 483-493 p.
Keyword [en]
caregiver burden, chronic obstructive pulmonary disease, decision-making, focus group, framework method, nursing, spouses
National Category
Nursing
Research subject
Caring sciences
Identifiers
URN: urn:nbn:se:oru:diva-49443DOI: 10.1111/jocn.13076ISI: 000370637600021PubMedID: 26818373Scopus ID: 2-s2.0-84955598684OAI: oai:DiVA.org:oru-49443DiVA: diva2:913766
Note

Funding Agencies:

Department of Pulmonary and Infectious Diseases, Nordsjaellands Hospital, Denmark

Danish Council for Strategic Research (DSF) 09-067157

Available from: 2016-03-22 Created: 2016-03-22 Last updated: 2016-03-22Bibliographically approved

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CiteExportLink to record
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Citation style
  • apa
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