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


METHODS
Qualitative study. Phenomenological perspective. Data were collected during 2013-2015.


METHODS
Primary, secondary and intermediate care. Osona (Barcelona).


METHODS
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.


METHODS
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.
Equipo de Atención Primaria Vall del Ges, Institut Català de la Salut, Torelló, España; Cátedra de Cuidados Paliativos, Universitat de Vic-Universitat Central de Catalunya, Vic, España. Electronic address: xcosta.cc.ics@gencat.cat.
Xavier
X
Costa
Cátedra de Cuidados Paliativos, Universitat de Vic-Universitat Central de Catalunya, Vic, España; Observatorio QUALY-Centro Colaborador de la OMS para Programas Públicos de Cuidados Paliativos, Institut Català d'Oncologia (ICO), Barcelona, España.
Xavier
X
Gómez-Batiste
Departament d'Infermeria de Salut Pública, Salut Mental i Maternoinfantil, Universitat de Barcelona, Barcelona, España.
Margarida
M
Pla
Cátedra de Cuidados Paliativos, Universitat de Vic-Universitat Central de Catalunya, Vic, España; Observatorio QUALY-Centro Colaborador de la OMS para Programas Públicos de Cuidados Paliativos, Institut Català d'Oncologia (ICO), Barcelona, España.
Marisa
M
Martínez-Muñoz
Cátedra de Cuidados Paliativos, Universitat de Vic-Universitat Central de Catalunya, Vic, España; Programa de prevención y atención a la cronicidad, Departament de Salut, Generalitat de Catalunya, Barcelona, España.
Carles
C
Blay
Programa de prevención y atención a la cronicidad, Departament de Salut, Generalitat de Catalunya, Barcelona, España.
Laura
L
Vila
D000368:Aged; D000369:Aged, 80 and over; D001294:Attitude to Health; D017028:Caregivers / Q000523:psychology; D004417:Dyspnea / Q000209:etiology*; D005192:Family Health; D005260:Female; D006801:Humans; D008297:Male; D029424:Pulmonary Disease, Chronic Obstructive / Q000150:complications* / Q000628:therapy; D012720:Severity of Illness Index
Atención centrada en el paciente; Atención paliativa; Disnea; Dyspnoea; Enfermedad pulmonar obstructiva crónica; Estudio cualitativo; Palliative care; Patient-centred care; Pulmonary disease; chronic obstructive