Maria E Loades1,2, Venessa James1, Laura Baker3, Abbie Jordan1,4, Aditi Sharma1. 1. Department of Psychology, University of Bath. 2. Bristol Medical School, University of Bristol. 3. University Hospitals Bristol. 4. Centre of Pain Research, University of Bath.
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.
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.
Authors: Merel M Nap-van der Vlist; Emma E Berkelbach van der Sprenkel; Linde N Nijhof; Martha A Grootenhuis; Cornelis K van der Ent; Joost F Swart; Annet van Royen-Kerkhof; Martine van Grotel; Elise M van de Putte; Sanne L Nijhof; Marijke C Kars Journal: BMJ Paediatr Open Date: 2021-05-18