Living with Advanced Chronic Obstructive Pulmonary Disease: A Qualitative Interview Study with Patients and Informal Carers

Abstract

The disease trajectory in chronic obstructive pulmonary disease (COPD) is characterised by a progressive decline in overall function, loss of independence and reduction of health-related quality of life. Although the symptom burden is high and care is often demanding, patients' and informal carers' experiences in living with advanced COPD are seldom described. This study sought to explore patients' and informal carers' experiences in living with advanced COPD and to understand their awareness about palliative care provision in advanced COPD. 20 patients and 20 informal carers were recruited in a respiratory care service in Southern Switzerland. Semi-structured individual interviews with participants were conducted on clinic premises and audio recorded. Interviews lasted between 35 and 45 minutes. Data were analysed using thematic analysis.Living day to day with COPD, psychosocial dimension of the disease and management of complex care were the main themes identified. Patients and informal carers reported a range of psychological challenges, with feelings of guilt, discrimination and blame. Most of the participants had no knowledge of palliative care and healthcare services did not provide them with any information about palliative care approaches in advanced COPD. The reported psychological challenges may influence the relationship between patients, informal carers and healthcare professionals, adding further complexity to the management of this long-term condition. Further research is needed to explore new ways of managing complex care in advanced COPD and to define how palliative care may be included in this complex care network.

Stigma Experiences in People with Chronic Obstructive Pulmonary Disease: An Integrative Review

“…Eight studies reported that having a self-inflicted disease generates feelings of self-blame, shame, and guilt in people with COPD. 28 , 30 , 31 , 33 , 34 , 36 , 37 , 41 Six studies found that using a medical device (eg, inhaler or oxygen) and experiencing COPD symptoms (eg, breathlessness or uncontrollable coughing) in public cause feelings of embarrassment. 28 , 31 , 33 , 35 , 40 , 43 Three studies pointed out that people with COPD suffer from negative emotions (eg, feelings of being losers, anger, grief, fear, anxiety, depression, sadness, uselessness, or hopelessness) because their smoking resulted in an incurable disease.…”

“… 36 , 41 In addition, people with COPD who continue smoking have feelings of being a failure or a loser. 34 , 36 , 41 , 42 …”

“…For example, some will try to maintain their normal routine to preserve functional capacity. 33 Some will reveal their smoking habits to other 34 and quit smoking. 36 Another study reported that sharing with others who are understanding and empathetic helps alleviate feelings of guilt and improves self-esteem.…”

“…Three studies described that healthcare providers reprimanded people with COPD for their smoking. 31 , 34 , 36 People with COPD reported that their doctors were apathetic about their care and showed little interest once they became aware of their smoking. 35 , 37 Another study reported that people with COPD have few opportunities for employment because of the potential negative impact on employers’ costs for health insurance.…”

“…Adherence to oxygen tended to increase with time and was often associated with significant personal compromises. 83.3% Fusi-Schmidhauser, Froggatt and Preston, 34 2020, Switzerland To explore the experiences of patients and informal carers in living with advanced COPD as well as their awareness about palliative care provision in advanced COPD Qualitative, descriptive study i) People with COPD (Stages III and IV) (n = 20) Age (mean) = 69 yrs (range: 63–76 yrs) Smoking status: former (n = 9); current (n = 11) ii) Informal carers (n = 20) Daily activities were highly influenced by COPD symptoms. A range of psychological challenges along the disease trajectory, with feelings of guilt, discrimination and blame, were reported.…”