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.