• Marjolein Gysels and Irene J Higginson.
• King's College London, Department of Palliative Care, Policy and Rehabilitation, School of Medicine, London, United Kingdom. marjolein.gysels@kcl.ac.uk
• J Pain Symptom Manage. 2008 Nov 1;36(5):451-60.

AbstractThe aim of this study was to explore the experience of breathlessness in patients with chronic obstructive pulmonary disease (COPD) through patients' accounts of their interactions with services. The study has a qualitative design based on Grounded Theory. Data were collected through semistructured, in-depth interviews over the period of July 2005 to March 2006. This was complemented by participant observation during outpatient consultations. NVivo software was used to manage and analyze the data. The study is part of a wider program, "Improving Breathlessness." Data were collected in a large inner city teaching hospital and the community in London. A purposive sample of 18 COPD patients was selected. Fourteen patients were recruited from outpatient clinics in the hospital, four patients via a family doctor's surgery. Patients with moderate or severe COPD, who were experiencing problems with breathlessness, were included. The results showed that the low access to services by COPD patients is due to the nature of breathlessness itself, with its slow and surreptitious onset; patient interactions with the social environment assigning stigma to breathlessness; and the way the symptom is addressed by institutions, such as health care services, which discredit the patient's experience. The concept that best captures the experience of breathlessness is "invisibility." Problems with access to care are an additional dimension of suffering added to the illness experience. A palliative care approach is promoted and essential priorities identified to reduce barriers to access.

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