Vivir con la enfermedad pulmonar obstructiva crónica avanzada: el impacto de la disnea en los pacientes y cuidadores()

AIM: To understand the experiences of patients and caregivers living with advanced chronic obstructive pulmonary disease, the impact of their symptoms and care needs arising from a functional, emotional, and social context. DESIGN: Qualitative study. Phenomenological perspective. Data were collected during 2013-2015. SETTING: Primary, secondary and intermediate care. Osona (Barcelona). PARTICIPANTS: The study included 10 Primary Care patients with advanced chronic obstructive pulmonary disease, their respective 10 caregivers, and 19 primary care professionals, as well as 2 lung specialists, 2 palliative care professionals involved in their care, and one clinical psychologist. METHOD: Theoretical sampling. Semi-structured and in-depth interviews with patients, caregivers, and professionals (47 interviews). RESULTS: The emergent topics identified in patients and caregivers interviews refer to dyspnoea, the predominant symptom without effective treatment and with a major impact on patients and caregivers lives. A symptom with great functional, emotional and social repercussions to which they need to adapt in order to survive. CONCLUSIONS: Beyond pharmacological measures to control respiratory symptoms, proper care of patients with chronic obstructive pulmonary disease, requires understanding of suffering, the losses and limitations that it causes in their lives and those of their caregivers. A palliative, holistic and closer approach to their real experiences, together with an empowerment to adapt to debilitating symptoms, could contribute to a better life in the end-stages of the disease.