“I Can Breathe Again!” Patients’ Self-Management Strategies for Episodic Breathlessness in Advanced Disease, Derived from Qualitative Interviews

Steffen T. Simon, Vera Weingärtner, Irene J. Higginson, Hamid Benalia, Marjolein Gysels, Fliss E.M. Murtagh, James Spicer, Philipp Linde, Raymond Voltz, Claudia Bausewein

Research output: Contribution to journalArticlepeer-review

33 Citations (Scopus)
278 Downloads (Pure)

Abstract

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 (CHF), chronic obstructive pulmonary disease (COPD), lung cancer (LC), or motor neuron disease (MND) 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 CHF, 14 COPD, 13 LC, nine MND; mean (standard deviation [SD]) age 68 (12), 41% female, 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.
Key Words
Original languageEnglish
Pages (from-to)228-234
JournalJournal of Pain and Symptom Management
Volume52
Issue number2
Early online date21 May 2016
DOIs
Publication statusPublished - Aug 2016

Keywords

  • coping
  • dyspnea
  • episodic breathlessness
  • palliative care
  • respiratory symptoms
  • self-management

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