Objective
To explore and understand the experiences of the patients with severe asthma throughout their patient journey.
Design
Qualitative ethnographic study based on an ethnographic approach.
Location
Barcelona, Sevilla and Madrid.
Participants and context
Ten adult (>18 years) persons (six females and four males) diagnosed with severe asthma were selected from public healthcare settings by purposive sampling.
Method
Semi-structured in-depth interviews performed by an expert anthropologist in the patients’ homes. Data was collected using a video and audio recorder and analyzed by three researchers using the sense-making methodology.
Results
Life experiences were classified into four main areas: life experiences throughout the patient journey, attitudes towards the disease and healthcare professionals, unmet needs regarding knowledge and self-management, and relationship with doctors and healthcare providers. Within each area, several topics and subtopics emerged, allowing to distinguish three initial phases of the disease and three attitudinal profiles.
Conclusions
During the initial phases of severe asthma, participants underestimated its severity and symptoms, resulting in disease denial and passivity. Participants associated disease severity with chronicity, which was internalized years after its diagnosis, delaying patients’ adaptation to the disease and their ability of to self-manage it. Participants noticed gaps in health-related information and communication and needed a comprehensive understanding of their disease from the beginning.
