Parental Experiences of Adolescent Cancer-Related Fatigue: A Qualitative Study. (22nd October 2020)

• Record Type: Journal Article
• Authors: Loades, Maria E; James, Venessa; Baker, Laura; Jordan, Abbie; Sharma, Aditi
• Is Part Of: Journal of pediatric psychology. Volume 45:Number 10(2020)
• Page Start: 1093
• Page End: 1102
• Publication Date: 2020-10-22
• Subjects: cancer and oncology -- parents -- qualitative methods; Clinical child psychology -- Periodicals; 618.9289005
• DOI: 10.1093/jpepsy/jsaa080
• Languages: English
• ISSNs: 0146-8693

Abstract

Abstract: Objective: Cancer-related fatigue is common, disabling, and chronic, but professional help is not necessarily sought. Parents can support symptom management and facilitate help-seeking. This study explored parental experiences of their adolescent's cancer-related fatigue and what they do to help. Methods: Qualitative semi-structured interviews were conducted with 21 parents of 17 adolescents aged 12–18 who were previously diagnosed with cancer. Reflexive thematic analysis was used to analyze the data. Results: Three high-order themes were generated. Firstly, "fatigue is inevitable and unpredictable." This encompassed parental perceptions of fatigue as variable, distinct from normal tiredness, and linked to sleep and mood. Fatigue was seen as arising from cancer, which rendered parents helpless. Secondly, "fatigue is disruptive to normal life" beyond cancer treatment, which is contrary to expectations. Thirdly, parents managed fatigue by trying to balance the adolescent's desires for normality and their own perception of what is realistic with encouraging activities, and by seeking support from others. Conclusions: Parents see adolescent cancer-related fatigue as multi-faceted and experience it as unpredictable and attributed to cancer. They struggle to distinguish normal adolescent behavior from problematic fatigue, and to balance supporting and empowering the adolescent to live life to the fullest whilst also being realistic about the limitations imposed by fatigue and the benefits of activity. Parents try to manage fatigue practically but want more information about adolescent cancer-related fatigue to help establish their own and their adolescent's expectations.