Understanding the process of people with hypersensitivity pneumonitis implementing continuous antigen avoidance and their affecting situations: A grounded theory study

Abstract Aims and Objectives To explore the process by which people with hypersensitivity pneumonitis implement continuous antigen avoidance, alongside the situations that influence this process. Background Antigen avoidance is the primary treatment for people with hypersensitivity pneumonitis. However, the best method to support antigen avoidance has not yet been established. Design The present qualitative study used a constructivist grounded theory approach. Methods The participants were inpatients or outpatients with hypersensitivity pneumonitis diagnosed at a Japanese urban university hospital. In parallel with semi‐structured interviews and a medical record survey from 2016 to 2021, we conducted coding, categorising, writing memos, theoretical sampling and continuous comparisons of experiences from finding physical abnormalities to implementing antigen avoidance. The COREQ checklist was followed for reporting. Results Interpreting the experiences leading to the implementation of continuous antigen avoidance by 28 participants provided a process consisting of a core category: trying to maintain one's desired life under uncertain situations, and four phases: (1) searching for a convincing cause of the illness, (2) gradually understanding the disease, (3) realising the need for behaviour change and (4) seeking a good balance between behaviour change and one's desired life. The situations that influenced the process were also revealed. Conclusions Being convinced of the cause of one's illness and realising its severity led to the participants' realisation of the need for a behavioural change to avoid antigens. The uncertainty of the cause of illness and measures taken, a lack of clear advice from healthcare providers and one's desired life influenced participants' implementation of continuous antigen avoidance. Relevance to clinical practice This study provides important insights regarding how healthcare providers should better understand and support people with hypersensitivity pneumonitis in avoiding antigens.