title: Living with chronic obstructive pulmonary disease: The stories of frequent attenders to the Emergency Department.
abstract: OBJECTIVE
  To explore the experiences of chronic obstructive pulmonary disease (COPD) amongst individuals who have a high frequency of presentations to the Emergency Department and their carers.
  
  
  BACKGROUND
  Patients with COPD are amongst the most frequent attenders in the Emergency Department despite the chronic nature of their condition. Good self-management has previously been identified as a key to maintaining health and reducing COPD exacerbations. There has been limited investigation of those with COPD who frequently attend the Emergency Department.
  
  
  METHODS
  Descriptive qualitative phase of a mixed methods study.
  
  
  METHODS
  Individuals who had attended an Emergency Department within a single health district at least three times in the previous year for COPD were invited to participate in semistructured face-to-face interviews. A total of 19 individuals consented to participate, of whom 12 were male. Half of the interviews included both those with COPD and carers. Data were audio-recorded and transcribed, before being analysed using thematic analysis.
  
  
  RESULTS
  Five main themes emerged from the data, namely (i) a sense of grief, loss and guilt, yet hope for the future; (ii) the impact on carers; (iii) the end point of self-management; (iv) the healthcare experience; and (v) the primary care experience.
  
  
  CONCLUSIONS
  The experience of individuals with COPD who frequently present to the Emergency Department and their carers highlights the complexity of living with this disease. Providing effective intervention to manage exacerbation requires an understanding of the issues that are faced by patients and their carers. Clear systems and skills for sharing information are essential to decrease avoidable use of the Emergency Department.
authors.affiliation: Grand Pacific Health, Nowra, NSW, Australia.
authors.forename: Karin
authors.initials: K
authors.lastname: Robinson
authors.affiliation: Grand Pacific Health, Wollongong, NSW, Australia.
authors.forename: Elizabeth
authors.initials: E
authors.lastname: Lucas
authors.affiliation: Ambulatory and Primary Health Care, Illawarra Shoalhaven Local Health District, Warrawong, NSW, Australia.
authors.forename: Paul
authors.initials: P
authors.lastname: van den Dolder
authors.affiliation: School of Nursing, University of Wollongong, Wollongong, NSW, Australia.
authors.forename: Elizabeth
authors.identifier: http://orcid.org/0000-0001-8099-986X
authors.initials: E
authors.lastname: Halcomb
mesh_terms: D000368:Aged; D017028:Caregivers / Q000523:psychology*; D018450:Disease Progression; D004636:Emergency Service, Hospital / Q000706:statistics & numerical data*; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D010817:Physician-Patient Relations; D011320:Primary Health Care; D029424:Pulmonary Disease, Chronic Obstructive / Q000523:psychology* / Q000628:therapy; D036301:Qualitative Research; D011788:Quality of Life; D012189:Retrospective Studies; D000073278:Self-Management / Q000379:methods / Q000523:psychology
keywords: 
  COPD
  ; Emergency Department; chronic disease; patient experience