Like walking through treacle: the experience of fatigue for young people with interstitial lung disease

Interstitial Lung Disease in childhood (chILD) is rare, and little research has been conducted into the experience of fatigue. Fatigue is a complex phenomenon that can be difficult to quantify due to the various physiological and psychological factors involved. However, fatigue can significantly impact a range of quality-of-life areas for those with a respiratory condition. Our aim is to understand if there are any clinical or research needs relating to fatigue for young people with chILD. This qualitative, non-clinical study explores the lived experience of fatigue in young people with chILD. Fifteen participants comprising child-parent dyads (n = 2), young adults (n = 4) and parents (n = 9) were recruited from chILD patient organisations and online communities. We focused on the experience of fatigue in terms of how it is communicated, the symptoms, and their impact. We explored whether any factors led to the young person being motivated to push beyond fatigue. Data was analysed by constructivist grounded theory. There were three main themes of interest: (i) the experience of fatigue that includes reporting abnormal weakness and behavioural affect; (ii) the consequences of fatigue, such as its impact on education, society, and quality-of-life; (iii) motivational strategies and supportive measures that help young people manage their fatigue. Fatigue is a complex, multi-dimensional phenomenon for those living with chILD. For future work, we recommend incorporating the discussion of fatigue into clinic settings to assess any quality-of-life burden factors alongside living with chILD.