The lived experience of fatigue in children and adolescents with cancer: a systematic review

Abstract

Purpose: Objectives of this systematic review were to summarize how fatigue has been described from the perspective of children and adolescents with cancer, the impact of fatigue on quality of life, and child reported contributing factors and potential alleviators of fatigue.

Methods: We conducted electronic searches of Ovid Medline, EMBASE, PsycInfo, Science Citation, Social Science Citation (Web of Science), and CINAHL. We included studies of children and adolescents with cancer in which the experience of fatigue was described by the child/adolescent. The search was restricted to publications in English. Themes were summarized.

Results: Eleven studies were represented in 18 publications. Ages of included children ranged from 6 to 19 years. Majority of studies used semi-structured interviews to elicit participant's perceptions of fatigue. Terms used to describe fatigue included the following: tiredness, weary, loss of strength, dizziness, feeling drained, feeling drowsy, lacking motivation, exhaustion, and feeling emotional. Impact of fatigue related to not being able to participate in regular activities; needing to sleep or rest more; and impact on psychosocial health. Perceived alleviators of fatigue included exercise, distraction, rest, eating, and drinking.

Conclusions: Fatigue is impactful from the perspective of children and adolescents. Future research should focus on prospective exploration of the impact of fatigue on pediatric cancer patients and identifying approaches to reduce fatigue.

Keywords: Cancer; Child perspective; Fatigue; Lived-experience; Tiredness.