Living in negotiation: patients’experiences of being in the diagnostic process of COPD

Abstract

PurposeTo illuminate patients’ lived experiences of going through the process of being diagnosed with chronic obstructive pulmonary disease (COPD).Patients and methodsA phenomenological-hermeneutic analysis was applied in the interpretation of interviews with eight persons diagnosed with mild or moderate COPD.ResultsOne main theme ‘living in negotiation’, and three themes ‘living with a body out of step with the diagnosis’, ‘dealing with the past’, and ‘being challenged by the future’ reflected the process participants were living through in their quest for acceptance and a new balance in life. Participants found that the diagnostic processes were confusing, and that the diagnosis itself was ‘a slap in the face’. Unclear messages gave rise to fluctuating between an understanding of the condition as ‘not too severe’, insecurity, and fear. Shame and guilt related to the diagnosis had origins in the past, and in combination with the idea of ‘chronic’ the COPD diagnosis interfered with the present moment and gave rise to uncertainty for the future. The understanding of the present is related to negotiations not only with the past, but also with the future. Thus temporal aspects of the diagnosis are of great significance for the process of finding acceptance.ConclusionRegardless of disease severity, the diagnosis seems to be a breakdown of life, which puts life itself at stake. Medical professionals should be aware that the way the diagnosis is disclosed and communicated has considerable significance for how individuals understand and deal with their illness. The diagnosis should be communicated face-to-face, clearly and with empathy, and followed by information about COPD. Physicians should allow time and listen to the patients’ stories, and thus develop a shared understanding of the temporal aspect of the illness and patients’ needs and concerns. Thus, good communication is essential in determining whether the patient remains in negotiation, or enters a process toward acceptance and new understanding.

Patients and families realising their future with chronic obstructive pulmonary disease—A qualitative study

“…The number of studies of the experience of COPD in its initial stages is growing (Ansari et al., ; Arne et al., ; Berger et al., ; Lindgren, Storli, & Wiklund‐Gustin, ; Lindqvist & Hallberg, ). Although patients in this study were younger than participants in most of the earlier studies, the findings are in harmony with what has previously been revealed.…”

“…Health professionals tend to misinterpret patients’ shame and failure to quit smoking as a lack of motivation to change (Halding et al., ). However, to respect people's own personal stories (Bailey et al., ) and be sensitive to addressing smoking cessation in a helpful, nonjudgemental way is of major importance (Gullick & Stainton, ; Jonsdottir et al., ; Lindgren et al., ).…”

“…In the literature, it has been emphasised that COPD is underdiagnosed (GOLD, 2016;Lindberg, Bjerg-B€ acklund, R€ onmark, Larsson, & Lundb€ ack, 2006) but what it entails for the individuals involved has received less attention. Shame has been found in studies of people newly diagnosed with COPD (Arne et al, 2007;Lindgren et al, 2014).…”

“…Some patients continued to smoke to contain difficult feelings, particularly anxiety, and portrayed the cigarette as their "friend," an expression which has been described previously (Jonsdottir & Jonsdottir, 2007;Lindqvist & Hallberg, 2010). All of these expressions of nicotine addiction point to the intense ambivalence that exists between the need to smoke and the realisation of the need to quit (Gullick & Stainton, 2006;Lindgren et al, 2014).…”

Conceptions of everyday life among people living alone with chronic obstructive pulmonary disease

“…[8][9][10] People with COPD generally experience the diagnostic process as prolonged, and the diagnosis often creates uncertainty of what may happen in the future. [11] Some days are described to be "good", while other days can be "bad"; therefore, COPD is described as an uncontrolled disease. [12] As COPD progresses, there is often a strong fear of suffocation and death, and the patients feel that death is constantly "on their heels".…”