Meaning of living with severe chronic obstructive lung disease: a qualitative study

Marx, Gabriella; Nasse, Maximilian; Stanze, Henrikje; Boakye, Sonja Owusu; Nauck, Friedemann; Schneider, Nils

doi:10.1136/bmjopen-2016-011555

Cited by 46 publications

(63 citation statements)

References 26 publications

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“…Social isolation also impacted on help seeking—COPD participants described lack of mobility and the need to hide embarrassing or worsening symptoms. Evidence of social isolation in COPD patients has been identified before, but our study highlights that this may have wider consequences on consulting behaviour.…”

Section: Resultsmentioning

confidence: 99%

Lung cancer symptom appraisal among people with chronic obstructive pulmonary disease: A qualitative interview study

et al. 2019

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Objective The incidence of lung cancer is four times higher in people with chronic obstructive pulmonary disease (COPD) compared with the general population. Promotion of a shorter time from symptom onset to presentation is one potential strategy for earlier lung cancer diagnosis, but distinguishing respiratory symptoms can be difficult. We investigated how the experience of COPD influences symptom appraisal and help seeking for potential lung cancer symptoms. Methods We conducted qualitative interviews with men (n = 17) and women (n = 23) aged 40 to 83 years with COPD. Topic guides drew on the integrated symptom‐response framework and covered symptom experience, interpretation, action, recognition, help seeking, evaluation, and reevaluation. We used the framework method to analyse the data. Results Participants said that they attributed chest symptoms to their COPD; no other cause was considered. Participants said that family/friends noticed changes in their symptoms and encouraged help seeking. Others felt isolated by their COPD because they could not get out, were fatigued, or were embarrassed. Participants visited health professionals frequently, but increased risk of lung cancer was not discussed. Conclusions Our study provides insight into different levels of influence on symptom appraisal and targets for intervention. Greater awareness of increased lung cancer risk and support to act on symptom changes is essential and could be achieved through a concerted information campaign. Health professionals working with people with COPD could also optimise appointments to support symptom appraisal of potential lung cancer symptoms.

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Section: Resultsmentioning

confidence: 99%

Lung cancer symptom appraisal among people with chronic obstructive pulmonary disease: A qualitative interview study

et al. 2019

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“…There is overlap between the breathing space concept and that of the "shifting perspectives model of chronic illness" [140]. The opposite ends of the continuum of breathing space are illustrated in recent articles; however, each of these papers tend to focus only on one [56,60,106] or other [42,84] end of the continuum, rather than bringing them together as a more integrative concept.…”

Section: Discussionmentioning

confidence: 99%

Living with breathlessness: a systematic literature review and qualitative synthesis

et al. 2018

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What is the experience of people living with breathlessness due to medical conditions, those caring for them and those treating them, with regard to quality of life and the nature of clinical interactions?Electronic databases (Ovid MEDLINE, Embase, CINAHL Plus and PsycINFO) were searched (January 1987 to October 2017; English language), for qualitative studies exploring the experience of chronic breathlessness (patients, carers and clinicians). Two independent reviewers screened titles, abstracts and papers retrieved against inclusion criteria. Disagreements were resolved with a third reviewer. Primary qualitative data were extracted and synthesised using thematic synthesis.Inclusion and synthesis of 101 out of 2303 international papers produced four descriptive themes: 1) widespread effects of breathlessness; 2) coping; 3) help-seeking behaviour; and 4) clinicians' responsiveness to the symptom of breathlessness. The themes were combined to form the concept of "breathing space", to show how engaged coping and appropriate help-seeking (patient) and attention to symptom (clinician) helps maximise the patient's quality of living with breathlessness.Breathlessness has widespread impact on both patient and carer and affects breathing space. The degree of breathing space is influenced by interaction between the patient's coping style, their help-seeking behaviour and their clinician's responsiveness to breathlessness itself, in addition to managing the underlying disease.

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“…This non-recognition of COPD as a disease was also found in other studies. Patients with severe COPD have previously described COPD as a “way of life” rather than an illness [ 22 ] or as a “vague feeling of being ill” [ 23 ]. Habraken et al [ 24 ] suggested that COPD patients did not ask for help because they did not see themselves as ill.…”

Section: Discussionmentioning

confidence: 99%

Recollection of participating in a trial: A qualitative study of patients with severe and very severe chronic obstructive pulmonary disease

et al. 2018

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BackgroundDespite having similar palliative needs to patients with lung cancer, advanced chronic obstructive pulmonary disease (COPD) patients are less likely to receive palliative care. To evaluate the effect of introducing specialized palliative care with severe to very severe COPD patients, a randomized controlled trial (RCT) was conducted in Switzerland.AimTo explore COPD patients’ recollection of the trial, their needs and the usefulness of the palliative care interventions.Design and settingQualitative study with advanced COPD patients who participated in a specialized palliative care intervention, conducted in a general hospital.MethodEighteen patients with severe to very severe COPD were interviewed about their experiences. Interviews were transcribed and thematic content analysis was performed.ResultsPatients had poor recollection of the trial and difficulties understanding the palliative care intervention. No major differences were observed between patients who received the specialized intervention and those who did not. Content analysis emphasized that although they experienced disabling symptoms, participants tended to attribute their limitations to problems other than COPD and some declared that they were not sick. Patients reported restrictions due to oxygen therapy, and the burden of becoming dependent on it. This dependence resulted in intense anxiety, leading participants to focus on the present only. A strong feeling of perceived helplessness emerged from the patients’ interviews.ConclusionsOur findings suggest that poor recollection and understanding of the palliative care intervention act as barriers to the conduct of clinical trials with severe and very severe COPD patients. Their cognitive difficulties, perception of COPD, functional limitations, overwhelming anxiety, focus on the present and perceived helplessness also seem to hinder the implementation of such care.

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Meaning of living with severe chronic obstructive lung disease: a qualitative study

Cited by 46 publications

References 26 publications

Lung cancer symptom appraisal among people with chronic obstructive pulmonary disease: A qualitative interview study

Lung cancer symptom appraisal among people with chronic obstructive pulmonary disease: A qualitative interview study

Living with breathlessness: a systematic literature review and qualitative synthesis

Recollection of participating in a trial: A qualitative study of patients with severe and very severe chronic obstructive pulmonary disease

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