The lived experiences of people with idiopathic pulmonary fibrosis (IPF) to inform Home Based Pulmonary Rehabilitation (HBPR) in Delhi, India: A Qualitative Study

Background: Pulmonary Rehabilitation is a high-impact intervention for IPF but access is limited in India, a problem exacerbated by the pandemic which has seen HBPR become a necessity.

Aim: To explore the lived experiences of people living with IPF to inform HBPR in Delhi, India.

Methods: Ten semi-structured interviews with Adults with IPF. Data were analysed using thematic analysis.

Results: Five key themes were developed (Figure): (1) Diagnosis Journey: Experiences before and during diagnosis, including misdiagnosis, and how family, friends and colleagues reacted to diagnosis. (2) Impact of IPF: The physical and psychological impacts on their life. (3) Non-IPF Impact: The impact of COVID-19 infection and restrictions and previous/existing comorbidities. (4) Management of IPF: Strategies to manage symptoms, including exercise and relaxed breathing. (5) HBPR: Perspectives of HBPR, including its advantages and challenges, their goals if they were to participate, and suggestions to the development of a paper HBPR manual.

Conclusion: Patients living with IPF were positive about HBPR and the development of a paper-based manual to facilitate HBPR. The content of HBPR should be sensitive to the previous negative experiences of diagnosis, the additional impact of non-IPF health issues and challenges of reduced interactions with healthcare professionals

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