The meaning of living with chronic obstructive pulmonary disease

Abstract

Aim. To explore the existential experiences of 10 patients with chronic obstructive pulmonary disease (COPD) who had been prescribed long‐term oxygen therapy (LTOT) and their carers. Background. Chronic obstructive pulmonary disease is a progressive and debilitating condition, with an insidious onset often diagnosed in the middle to later years of life, after a history of worsening breathlessness (Herbert & Gregor 1997). It is a life limiting condition that is on the increase worldwide. Evidence suggests that for some people with COPD oxygen therapy can improve longevity and quality of life (MRC 1981, NOTT 1980). Understanding of the existential meaning of COPD for people is required. Method. This longitudinal Heideggerian study was carried out between 2005–2006. Participants were interviewed separately, in their own homes, at the start of LTOT, second 3 months later and finally at 9 months. Results. Themes of living with COPD emerged from the data; struggling, fear, experience of ill health, blame, fatalism and hidden disability. Conclusion. The participants all shared very negative experiences regarding the changes that living with COPD had placed on their lifestyle and quality of life. The introduction of oxygen appeared, for all but one couple, to increase the negative impact of living with poor health. Relevance to clinical practice. The participants’ experiences in this study highlight the need for health professionals to explore with people what it is like living with a long‐term condition. This sharing of experiences may help individuals to make informed choices about treatment and readdress their perception of ‘just existing’ with ‘no quality to their lives’ thereby enabling people and carers to adjust to living with a life‐limiting condition like COPD and the introduction of life long‐term therapeutic interventions.

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

“…Previous studies show that patients with COPD can occasionally be exposed to stigmatizing attitudes from both society and within the healthcare system. [13,[23][24][25] Old people appreciate having their own housing, despite being sick and in need of support from others. [38,39] A previous study shows that even if they live in a retirement home, more than half of the elderly experience loneliness.…”

“…(23) There was some concern about the risk of infection while staying in crowds. Most of the participants had experienced several cases of pneumonia; some of them had been admitted to hospital.…”

“…These feelings were reinforced by other peoples' attitude that COPD is a self-inflicted disease. [13,[23][24][25] They felt that they were exposed to stigmatized attitudes from not only society in general but also healthcare professionals. [13] Positive aspects can be present when a person is suffering from a chronic illness.…”

“…Co-habiting adults affected by COPD are often highly dependent on their spouses/partners, especially when COPD progresses. [13,23,[27][28][29] Currently, single households represent the most common form of habitation in Sweden. There are more than 4 million households in Sweden; 1.5 million of them are single households, accounting for nearly 38% of all households.…”

The influence of illness perspectives on self-management of chronic disease

“…Investigations of the experiences of people with different diagnoses have generated similar narratives about struggling, fear, altered self‐image, adjusted life, but also about finding solutions, and hope (e.g. regardless if the diseases were life‐threatening and non‐life threatening, progressive and non‐progressive, and episodic and ever‐present) (Clancy et al. 2009, Håkanson et al.…”