Experiences of living with idiopathic pulmonary fibrosis in relation to physical activity - “How the hills became steeper and steeper”: a qualitative interview study

Abstract

Abstract Introduction Idiopathic pulmonary fibrosis (IPF) is a progressive disease presenting with symptoms like dyspnoea, dry cough, and fatigue, which affect physical function and quality of life. No earlier qualitative studies have investigated physical activity in IPF. This study aims to explore experiences of living with IPF in relation to physical activity. Materials and methods Qualitative interviews were conducted with 14 participants living with IPF. The participants were 77 years old (range: 56–86) and diagnosed with IPF between 2 and 9 years ago. The analysis was performed by qualitative content analysis according to Graneheim and Lundman. Results The results indicated that life and one’s ability to be physically active is affected by IPF. Despite this, it seems possible to navigate past obstacles, which was illustrated by an overall theme: “My life is constrained, but I am hanging on”. Two major categories cover topics of IPF being a life changing diagnosis with changes in self-image and changed future plans regarding physical activity, as well as life. Physical activity was perceived to be challenging, yet in many ways used as a strategy, developed to manage life. Conclusions IPF affects physical activity as well as life, from onset onwards. By developing strategies for facilitating physical activity as well as identifying barriers, it seems possible to maintain an active life despite the disease. The healthcare system needs to create support systems that meet different needs during different phases of the disease. Trial registration “FoU in Sweden” Research and Development in Sweden (id: 227081).

Keywords

• Dyspnoea
• Fatigue
• Function
• Fibrosis
• Pulmonary
• Physical activity