Experiences and beliefs about fatigue, physical activity, physical fitness, and information needs in childhood cancer: Children and their parents’ perspectives
Date
2023
Authors
Journal Title
Journal ISSN
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Publisher
The University of Sydney
Abstract
This thesis aimed to explore the experiences of beliefs about, and information needs related to fatigue, particularly in relation to physical activity and physical fitness, in childhood cancer from children’s and parents’ perspectives. The experience of fatigue, the information needed by children treated for cancer and their families and the use of physical activity as a possible coping strategy were examined in this thesis through a multitude of methods, including a systematic review, as well as quantitative and qualitative research methods. Clearly, fatigue is a complex and variable experience, which places a burden both on children and their parents (Chapter 3,4,5). Fatigue has adverse consequences on all aspects of the child’s life (Chapter 3,4), including hindering their physical activity (Chapter 3,5), emotionally affecting parents (Chapter 3,4), and restricting social and family activities (Chapter 3). Children have different perspective on their information needs on cancer-related symptoms, including fatigue (Chapter 2,3) and their beliefs about fatigue (Chapter 4) than their parents. Children and their parents reported their needs for individualised informational support from healthcare providers about all aspects of the child’s fatigue (Chapter 2,3). Addressing questions and providing information about the child’s fatigue in verbal and written formats would better support both parents (Chapter 2,3) and children (Chapter 3). Physical activity appeared to be underappreciated strategy for the management of fatigue in children (Chapter 3,4,5). Children’s dichotomy perceptions on how physical activity helps with fatigue (Chapter 5), diversity of the beliefs around fatigue between children and their parents and between parents and each other (Chapter 4), and the complexity of fatigue experience (Chapter 3), indicate that fatigue is an issue that requires further discussion and multiple encounters with healthcare providers across and beyond the cancer treatment phases.
Description
This thesis presents the experiences and beliefs about fatigue, physical activity, physical fitness, and information needs in childhood cancer from children and their parents’ perspectives. This thesis consists of six chapters, including four research studies, with three of them were conducted during COVID-19.
Chapter One is an introduction that describes the overview of childhood cancer, its treatment, and the adverse side effects of childhood cancer and its treatment, which are commonly experienced by children treated for cancer, including fatigue. Then, this chapter introduces the background of childhood cancer-related fatigue, particularly its definition, possible underlying mechanisms, and contributing factors, how children and their parents experience this burdensome side effect, fatigue assessment and its prevalence and current supportive care for it. This chapter ends by outlining the aims of this thesis.
Chapter Two is a systematic review on information needs and preferences of children with cancer and their parents about cancer- and treatment-related symptoms and symptom management, including fatigue. This review is using the Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA) guidelines to narratively synthesise the eligible studies published up to June 2021 and the Mixed Methods Appraisal Tool to critically appraise the included studies. This systematic review is under review by the journal, Critical Reviews in Oncology/Hematology.
Chapter Three describes the findings of qualitative research conducted to explore the experience of children treated for cancer, aged 8-17 years, and their parents in dealing with the child’s fatigue and their information needs using semi-structured individual interviews and an inductive thematic analysis.
Chapter Four is a cross-sectional survey about beliefs of fatigue as an illness among children treated for cancer, and it has three aims. The primary aim is to assess beliefs about the child’s fatigue from the perspectives of parents of children aged 8-17 years as well as children aged 13-17 years using the Brief Illness Perception Questionnaire. This chapter also aims to compare the beliefs of children aged 13-17 years’ beliefs about fatigue with their parents’ beliefs and to determine the association between beliefs about the child’s fatigue with the child’s fatigue severity, self/proxy-reported using the PedsQL™ Multidimensional Fatigue Scale, and physical activity level of the child, self/proxy-reported using the Godin-Shephard Leisure-Time Physical Activity Questionnaire.
Chapter Five is a secondary analysis of cross-sectional survey data on childhood cancer survivors aged 8-18 years that were obtained from the University of New South Wales to mitigate COVID-19 impact on the PhD candidature. This chapter assesses and determines associations between childhood cancer survivors’ self-reported physical fitness domains, i.e., muscle strength, running speed and flexibility using The International Fitness Scale, and their perceptions of links between exercise and fatigue, i.e., perceiving fatigue as a barrier to exercise and perceiving exercising to reduce fatigue using simple questions. This chapter is under review by the Journal of Cancer Survivorship.
Chapter Six presents the concluding remarks of this thesis, including the personal and professional inspirations to conduct this thesis on childhood cancer-related fatigue, summaries of the findings presented in the previous chapters, discussion of key findings and their implications, and the future recommendations to advance the knowledge on fatigue and improve experiences of children and their parents with fatigue management.
Keywords
Childhood cancer, Fatigue, Physical activity, Experience, Beliefs, Information
Citation
Alqahtani, Q. M. (2023). Experiences and beliefs about fatigue, physical activity, physical fitness, and information needs in childhood cancer: Children and their parents’ perspectives [Doctoral thesis, The University of Sydney]. The Sydney eScholarship Repository. https://hdl.handle.net/2123/31813