title: Undefined and unpredictable responsibility: a focus group study of the experiences of informal caregiver spouses of patients with severe COPD.
abstract: OBJECTIVE
  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.
  
  
  METHODS
  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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: Department of Pulmonary and Infectious Diseases, Nordsjaellands Hospital, University of Copenhagen, Denmark.
authors.forename: Dorthe Gaby
authors.initials: DG
authors.lastname: Bove
authors.affiliation: University Healthcare Research Centre, Faculty of Health and Medicine, Örebro University, Sweden.|Centre for Assessment of Medical Technology, Örebro University, Sweden.
authors.forename: Ann-Britt
authors.initials: AB
authors.lastname: Zakrisson
authors.affiliation: Institute of Public Health, University of Copenhagen, Copenhagen, Denmark.|The University Hospital Centre for Health Research, Copenhagen University Hospital, Rigshospitalet, København Ø, Denmark.
authors.forename: Julie
authors.initials: J
authors.lastname: Midtgaard
authors.affiliation: Section for Nursing, Department of Clinical Medicine and Department of Public Health, Faculty of Health Sciences, Aarhus University, Aarhus N, Danmark.
authors.forename: Kirsten
authors.initials: K
authors.lastname: Lomborg
authors.affiliation: Research Unit, Nordsjaellands Hospital, University of Copenhagen, Department of Nursing, Metropolitan University College, Copenhagen, Denmark.
authors.forename: Dorthe
authors.initials: D
authors.lastname: Overgaard
mesh_terms: D000223:Adaptation, Psychological; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D017028:Caregivers / Q000523:psychology*; D005260:Female; D017144:Focus Groups; D006801:Humans; D008137:Longitudinal Studies; D008297:Male; D008875:Middle Aged; D029424:Pulmonary Disease, Chronic Obstructive / Q000451:nursing / Q000523:psychology*; D018454:Spouses / Q000523:psychology
keywords: caregiver burden; chronic obstructive pulmonary disease; decision-making; focus group; framework method; nursing; spouses