Antill Keener Tina
1 West Virginia University, Morgantown, WV, USA.
J Pediatr Oncol Nurs. 2019 Mar/Apr;36(2):74-85. doi: 10.1177/1043454218818062. Epub 2018 Dec 17.
Childhood cancer-related fatigue is often viewed as an inevitable symptom of cancer and cancer treatment leading to underassessment by health care providers and self-management by families in the home and hospital environment. Parents' perspectives of the influence of childhood cancer-related fatigue on their child's day-to-day life is needed to understand how parents may or may not prioritize, report, and/or manage the fatigue symptom. This qualitative study used conventional content analysis to describe parents' observations and perspectives on the influence of fatigue in their child's day-to-day quality of life (QOL). Eleven interviews were gathered from parents. The concept childhood cancer-related fatigue and domains of QOL in pediatric oncology patients were used to guide the study, construct interview questions, and conduct conventional content analysis. A synthesis of three categories and seven codes led to three major findings: (a) parents perceive their child's symptoms as co-occurring not as a discrete entity of fatigue, (b) parents accept the child's behavior as a "new normal," and (c) parents recognize fatigue as a warning sign. The study findings reveal differences in how parents observe childhood cancer-related fatigue and how they perceive the symptom influences day-to-day QOL. Findings of this study support current guidelines underscoring the importance of multidimensional fatigue care. Additionally, the findings suggest a standardized multiple symptom instrument may be helpful in assessing symptom experience.
儿童癌症相关疲劳通常被视为癌症及癌症治疗不可避免的症状，这导致医疗服务提供者评估不足，以及家庭在家庭和医院环境中的自我管理不足。了解父母如何看待儿童癌症相关疲劳对孩子日常生活的影响，对于理解父母是否会优先考虑、报告和/或管理疲劳症状至关重要。这项定性研究采用常规内容分析法，描述父母对疲劳对孩子日常生活质量（QOL）影响的观察和看法。研究收集了11位父母的访谈。儿童癌症相关疲劳的概念以及儿科肿瘤患者生活质量的领域被用于指导研究、构建访谈问题并进行常规内容分析。三个类别和七个编码的综合分析得出了三个主要发现：（a）父母认为孩子的症状是同时出现的，而不是一种离散的疲劳实体；（b）父母将孩子的行为视为“新常态”；（c）父母将疲劳视为一个警示信号。研究结果揭示了父母观察儿童癌症相关疲劳的方式以及他们认为该症状如何影响日常生活质量之间的差异。本研究结果支持当前强调多维疲劳护理重要性的指南。此外，研究结果表明，标准化的多症状工具可能有助于评估症状体验。
