title: I can not get a breath: experiences of living with advanced chronic obstructive pulmonary disease.
abstract: This study aims to explore the potential for palliative care among people living with advanced chronic obstructive pulmonary disease (COPD). Individual semi-structured interviews (n=13) were conducted with people who had a diagnosis of advanced COPD and were on optimal tolerated drug therapy, with their breathing volume (forced expiratory volume at less than 30%) or were on long-term oxygen therapy or non-invasion ventilation. Participants raised concerns about the uncertain trajectory of the illness and reported unmet palliative care needs with poor access to palliative care services. For most people, palliative care was associated with end of life; therefore, they were unwilling to discuss the issue. There was a wide acceptance that, medically, nothing more could be done. Findings also suggest that patients had unmet palliative care needs, requiring information and support. The research suggests the need for palliative care to be extended to all (regardless of diagnosis), with packages of care developed to target specific needs.
authors.affiliation: University of Ulster, Institute of Nursing Research and School of Nursing, Newtownabbey, Northern Ireland. f.hasson@ulster.ac.uk
authors.forename: F
authors.initials: F
authors.lastname: Hasson
authors.forename: A
authors.initials: A
authors.lastname: Spence
authors.forename: M
authors.initials: M
authors.lastname: Waldron
authors.forename: G
authors.initials: G
authors.lastname: Kernohan
authors.forename: D
authors.initials: D
authors.lastname: McLaughlin
authors.forename: B
authors.initials: B
authors.lastname: Watson
authors.forename: B
authors.initials: B
authors.lastname: Cochrane
mesh_terms: D000203:Activities of Daily Living / Q000523:psychology; D000223:Adaptation, Psychological; D000368:Aged; D001294:Attitude to Health; D018450:Disease Progression; D004417:Dyspnea / Q000209:etiology / Q000517:prevention & control / Q000523:psychology*; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D020380:Needs Assessment / Q000458:organization & administration*; D009660:Northern Ireland; D015404:Nursing Methodology Research; D010166:Palliative Care / Q000379:methods / Q000523:psychology; D010353:Patient Education as Topic; D011379:Prognosis; D029424:Pulmonary Disease, Chronic Obstructive / Q000150:complications*; D036301:Qualitative Research; D011788:Quality of Life / Q000523:psychology; D012720:Severity of Illness Index; D012944:Social Support; D011795:Surveys and Questionnaires