Perceptions and Experiences of Patients and Informal Caregivers in Advanced Chronic Obstructive Pulmonary Disease : An Exploratory Study (TH371B)

Fusi-Schmidhauser, Tanja and Froggatt, Katherine and Preston, Nancy (2018) Perceptions and Experiences of Patients and Informal Caregivers in Advanced Chronic Obstructive Pulmonary Disease : An Exploratory Study (TH371B). Journal of Pain and Symptom Management, 55 (2). p. 592. ISSN 0885-3924

Abstract

Objectives • Understanding the perceptions of patients and informal caregivers in advanced COPD. • Understanding what is lacking in PC provision in advanced COPD. Original Research Background Although chronic obstructive pulmonary disease (COPD) is recognized as being a life-limiting condition with palliative care needs, palliative care provision is seldom implemented in this population. The disease unpredictability, the misconceptions about palliative care being restricted to cancer and only being relevant in the last days of life prevent a timely integrated care plan for patients with advanced COPD. Research Objectives To explore patients and informal caregivers' experiences during the disease trajectory and to understand their perceptions on palliative care integration in COPD. Methods Ten individual interviews with adult patients suffering from advanced COPD (GOLD stages 3 and 4) and their informal caregivers were conducted and recorded. Data analysis was performed through thematic analysis. Results Six different themes were identified. Patients reported a feeling of personal guilt and a sense of discrimination by healthcare professionals with regard to their smoking habit. Informal caregivers mentioned their caring experience of loved-ones with a “self-inflicted disease” and their distress over acute exacerbations with a sense of helplessness in the case of dyspnoea. Both groups underlined their knowledge about the disease trajectory and the importance of having a palliative care support, which is currently lacking, addressing all multidimensional aspects of advanced COPD. Conclusion These findings informed the second phase of the study, which involves healthcare professionals in a collaborative inquiry group as part of a participatory action research project. This group will aim to develop and try out new ways to integrate PC into outpatients' services for people with severe COPD.