COPD patents’ experiences, self-reported needs, and needs-driven strategies to cope with self-management
Int J COPD Dis 2019;14:1033–43
COPD is characterised by a gradual decline in health and progressive organ failure, with acute exacerbations and decreased chances of survival. In addition to struggling with multiple medications and multimorbidity, a patient with COPD will experience uncertainty, chaos, fluctuations in health and repeated setbacks. It is reasonable to assume that the therapeutic needs of patients with COPD will not be met by therapy alone, but rather by continuous and flexible interdisciplinary treatment.
Self-management refers to an individual’s active management of a chronic illness in collaboration with their family members and clinicians, and involves education, physical therapy and monitoring, with the emphasis on patients being in control of their own lives.
Pulmonary rehabilitation (PR) is effective for patients at every stage of COPD, in that it improves quality of life and functional status by reducing symptoms of COPD. However, there is a strong likelihood that patients with COPD receive neither appropriate self-management education nor timely assessments for PR. The authors proposed that an evaluation of the patient’s wellbeing be conducted in preparation for PR, and that this evaluation be based on the patient-clinician relationship, with a particular focus on the patient’s view of what they need. Such research into patients’ needs is lacking in the literature. Therefore, the purpose of this study was to explore COPD patients’ experiences, self-reported needs and needs-driven strategies for coping with COPD.
Ten participants with mild-to-severe COPD were each interviewed either once or twice, and a total of 15 in-depth interviews were conducted, recorded, transcribed and analysed. Fourteen needs were identified and eight clusters of needs-driven strategies that patients used for coping with their self-management. Helpful coping strategies included conducting financial arrangements, maintaining hope, fighting tobacco addiction, seeking knowledge about COPD and accepting support. Having a positive mindset and a willingness to accept professional help were important. Procrastination and avoidance were examples of unhelpful coping strategies. The study also highlighted the cycle of dyspnoea, anxiety and fear of breathlessness experienced by participants.
The study authors call for further studies on the biopsychosocial attributes of dyspnoea and better education for clinicians to help patients improve self-management.