Living with advanced chronic obstructive pulmonary disease: The impact of dyspnoea on patients and caregivers

作者：Costa Xavier^*; Gomez Batiste Xavier; Pla Margarida; Martinez Munoz Marisa; Blay Carles; Vila Laura

来源：Atencion Primaria, 2016, 48(10): 665-673.

DOI：10.1016/j.aprim.2016.02.008

• Pulmonary disease
• chronic obstructive
• Dyspnoea
• Palliative care
• Patient-centred care

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.

• 出版日期2016-12