- 'I Can Breathe Again!' Patients' Self-Management Strategies for Episodic Breathlessness in Advanced Disease, Derived from Qualitative Interviews
- Journal of Pain and Symptom Management
- Volume | Issue number
- 52 | 2
- Pages (from-to)
- Document type
- Faculty of Social and Behavioural Sciences (FMG)
- Amsterdam Institute for Social Science Research (AISSR)
Context. Episodic breathlessness causes additional distress to breathless patients with advanced disease, but management is
still insufficient and there is a lack of knowledge on effective coping strategies.
Objectives. The aim was to explore patients’ self-management strategies for episodic breathlessness.
Methods. In-depth interviews with patients suffering from episodic breathlessness as a result of chronic heart failure,
chronic obstructive pulmonary disease, lung cancer, or motor neuron disease were conducted. Interviews were transcribed
verbatim and analyzed guided by the analytic hierarchy of Framework analysis.
Results. A total of 51 participants were interviewed (15 chronic heart failure, 14 chronic obstructive pulmonary disease, 13
lung cancer, and nine motor neuron disease; age, mean [SD], 68 , 41% women, median Karnofsky index 60%). They
described six main strategies for coping with episodes of breathlessness: reduction of physical exertion, cognitive and
psychological strategies, breathing techniques and positions, air and oxygen, drugs and medical devices, and environmental
and other strategies. Some strategies were used in an opposing way, e.g., concentrating on the breathing vs. distraction from
any thoughts of breathlessness or laying down flat vs. standing up and raising hands.
Conclusion. Patients used a number of different strategies to cope with episodic breathlessness, adding more detailed
understanding of existing strategies for breathlessness. The findings, therefore, may provide a valuable aid for health care
providers, affected patients, and their relatives.
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