Research article summary (published 29 Nov 2008):

The silence of patients with end-stage COPD: a qualitative study.

Full Abstract

BACKGROUND: Patients with end-stage chronic obstructive pulmonary disease (COPD) experience poor quality of life and considerable problems in daily life. However, as they often do not actively express a wish for help, they do not get the help they need. AIM: To gain insight into why patients with end-stage COPD tend not to express a wish for help. DESIGN OF STUDY: Prospective qualitative study with semi-structured interviews. SETTING: Outpatient clinics of four hospitals and one centre specialising in asthma and COPD in the Netherlands. METHOD: Sixteen semi-structured interviews were conducted with 11 patients with end-stage COPD. RESULTS: To express a wish for help, patients should regard their limitations as abnormal and should realise that there are possibilities to improve their situation. However, this was not the case with the patients interviewed. They appeared to consider themselves ill at a time of acute exacerbation of their illness, but regarded their everyday life as normal. In addition, patients lived with the assumption that, as their lungs were damaged beyond repair, they could not get help. CONCLUSION: Patients with end-stage COPD do not actively express a wish for help because they do not consider their limitations to be abnormal and because they do not realise that there are possibilities to improve their situation. These results suggest that care in this stage of the disease should focus on improving daily life instead of just aiming to improve the functioning of the lungs. Professionals in health care should actively explore what kind of practical help these patients might welcome in keeping up their daily activities. Future research should focus on studying whether such an approach applies to the needs of patients with end-stage COPD.

Author information

Author/s: Habraken, Jolanda M (JM); Pols, Jeannette (J); Bindels, Patrick J E (PJ); Willems, Dick L (DL);

Affiliation: Department of General Practice, Academic Medical Center, University of Amsterdam, The Netherlands. j.m.habraken(-atsign-)amc.uva.nl

Journal and publication information

Publication Type: Journal Article; Multicenter Study; Research Support, Non-U.S. Gov't

Journal: The British journal of general practice : the journal of the Royal College of General Practitioners (Br J Gen Pract), published in England. (Language: eng)

Reference: 2008-Dec; vol 58 (issue 557) : pp 844-9

Dates: Created 2008/12/10; Completed 2008/12/31; Revised 2009/06/29;

PMID: 19068157, status: MEDLINE (last retrieval date: 6/29/2009, IMS Date: )

Sourced from the National Library of Medicine. Abstract text and other information may be subject to copyright.

Comments and Corrections

CommentIn: Evid Based Nurs. 2009 Jul;12(3):95. (PMID: 19553432)

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MeSH headings (categories)

This article was linked to the MESH Headings shown below.

Activities of Daily Living Aged Aged, 80 and over Attitude to Health Female Humans Male Middle Aged Netherlands

Netherlands Palliative Care - methods Patient Acceptance of Health Care - psychology Patient Satisfaction Prospective Studies Pulmonary Disease, Chronic Obstructive - physiopathology; psychology; therapy Qualitative Research Questionnaires Sickness Impact Profile

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