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Ethnographic survey of patients and caregiver’s life journey in idiopathic pulmonary fibrosis.
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Abstract
Idiopathic pulmonary fibrosis (IPF) is a chronic, progressive lung disease associated with high mortality. The IPF journey affects patients' and caregivers' quality of life, this should be taken into account as an important parameter for a better disease management. An ethnographic study was conducted between December 2019 and January 2020 to explore social disease representations, patients' and cargivers' experiences in the disease journey and consequences in their daily life, to identify the means of actions permitting a quality of life (QoL) improvement.