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      Narratives of breathlessness in chronic obstructive pulmonary disease

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          Abstract

          Aims and objectives

          To explore patient perceptions of chronic obstructive pulmonary disease exacerbation and the patients’ experiences of their relations with health personnel during care and treatment.

          Background

          Patients suffering from acute exacerbation of chronic obstructive pulmonary disease often experience life-threatening situations and undergo noninvasive positive-pressure ventilation via bi-level positive airway pressure in a hospital setting. Theory on trust, which often overlaps with the issue of power, can shed light on patient’s experiences during an acute exacerbation.

          Design

          Narrative research design was chosen.

          Methods

          Ten in-depth qualitative interviews ( n = 10) were conducted with patients who had been admitted to two intensive care units in Western Norway during the autumn of 2009 and the spring of 2010. Narrative analysis and theories on trust and power were used to analyse the interviews.

          Results

          Because of their breathlessness, the patients perceived that they were completely dependent on others during the acute phase. Some stated that they had experienced an altered perception of reality and had not understood how serious their situation was. Although the patients trusted the health personnel in helping them breathe, they also told stories about care deficiencies and situations in which they felt neglected.

          Conclusions

          This study shows that patients with an acute exacerbation of chronic obstructive pulmonary disease often feel wholly dependent on health personnel during the exacerbation and, as a result, experience extreme vulnerability.

          Relevance to clinical practice

          The findings give nurses insight into building trust and a good relationship between patient and caregiver during an acute exacerbation of chronic obstructive lung disease.

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          Most cited references23

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          Discourse and social change

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            Narrative Knowing and the Human Science

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              Patient understanding, detection, and experience of COPD exacerbations: an observational, interview-based study.

              This study was conducted to gain insight into patients' comprehension, recognition, and experience of exacerbations of COPD, and to explore the patient burden associated with these events. A qualitative, multinational, cross-sectional, interview-based study. Patients' homes. Patients (n = 125) with predominantly moderate-to-very severe COPD (age > or = 50 years; with two or more exacerbations during the previous year). Patients underwent a 1-h face-to-face interview with a trained interviewer. During the preceding year, patients experienced a mean +/- SD of 4.6 +/- 5.4 exacerbations, after which 19.2% (n = 24) believed they had not fully recovered. Although commonly used by physicians, only 1.6% (n = 2) of patients understood the term exacerbation, preferring to use simpler terms, such as chest infection (16.0%; n = 20) or crisis (16.0%; n = 20) instead. Approximately two thirds of patients stated that they were aware of when an exacerbation was imminent and, in most cases, patients recounted that symptoms were consistent from one exacerbation to another. Some patients (32.8%; n = 41), however, reported no recognizable warning signs. At the onset of an exacerbation, 32.8% of patients (n = 41) stated that they reacted by self-administering their medication. Some patients spontaneously mentioned a fear of dying (12.0%; n = 15) or suffocating (9.6%; n = 12) during exacerbations, and effects on activities, mood, and personal/family relationships were frequently reported. Physicians tended to underestimate the psychological impact of exacerbations compared with patient reports. This study shows that patients with frequent exacerbations have a poor understanding of the term exacerbation. Patient recollections suggest that exacerbation profiles vary enormously between patients but that symptoms/warning signs are fairly consistent within individuals, and are generally recognizable. Exacerbations appear to have a significant impact on patient well-being, including psychological well-being, and this may be underestimated by physicians.
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                Author and article information

                Contributors
                Role: Associate Professor
                Role: Assistant Professor
                Role: Associate Professor
                Role: Professor
                Journal
                J Clin Nurs
                J Clin Nurs
                jocn
                Journal of Clinical Nursing
                BlackWell Publishing Ltd (Oxford, UK )
                0962-1067
                1365-2702
                November 2013
                27 July 2013
                : 22
                : 21-22
                : 3062-3070
                Affiliations
                Faculty of Health Sciences, Aalesund University College Aalesund, Norway
                Helse Møre og Romsdal Aalesund, Norway
                Aalesund University College Aalesund, Norway
                Medical Clinic, Helse Møre og Romsdal Aalesund, Norway
                Medical Faculty, Norwegian University of Science and Technology (NTNU) Trondheim, Norway
                Faculty of Health and Occupational Studies, University of Gävle Gävle, Sweden
                Author notes
                Correspondence: Marit Kvangarsnes, Associate Professor, Faculty of Health Sciences, Aalesund University College, 6025 Aalesund, Norway. Telephone: +4770075073; +4799400695. E-mail: mk@ 123456hials.no
                Article
                10.1111/jocn.12033
                4229005
                23889291
                7795ea70-d7cb-40fd-9a55-5325cf1f5065
                © 2013 The Authors. Journal of Clinical Nursing published by John Wiley & Sons Ltd.

                This is an open access article under the terms of the Creative Commons Attribution-NonCommercial License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited and is not used for commercial purposes.

                History
                : 11 August 2012
                Categories
                Clinical Issues

                Nursing
                copd exacerbation,interviews,narratives,patient experiences,patient participation,trust
                Nursing
                copd exacerbation, interviews, narratives, patient experiences, patient participation, trust

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