Woodgate Roberta Lynn, Degner Lesley Faith, Yanofsky Rochelle
Faculty of Nursing, Helen Glass Center for Nursing, University of Manitoba, Winnipeg, Manitoba R3T 2N2, Canada
J Pain Symptom Manage. 2003 Sep;26(3):800-17. doi: 10.1016/s0885-3924(03)00285-9.
A sound and comprehensive knowledge base about symptoms in children experiencing cancer is necessary if health care professionals hope to effectively manage their symptoms. To date, there is still much to be discovered about how children with cancer and their families experience childhood cancer symptoms. Accordingly, a longitudinal qualitative study was undertaken between July 1998 and December 2000 to explore and describe the childhood cancer symptom course from the perspectives of children and their families. The study was conducted in three settings: the participants' homes and both an inpatient and outpatient pediatric cancer unit located in Western Canada. Thirty-nine children (4 1/2- to 18-year-old males and females) with mixed cancer diagnoses and their families (parents and siblings) participated in the study. The majority of the children were diagnosed with either leukemia or lymphoma (72%), had siblings (87%), and two parents (87.2%), and remained in remission at the completion of the study (90%). All the children received chemotherapy either alone (56%) or in combination with surgery (18%), radiation (5%), radiation and bone marrow transplant (8%), radiation and surgery (10%), and surgery, radiation, and bone marrow transplant (3%). Multiple methods of data collection were used including open-ended formal interviewing and participant observation. Interview and participant observation data were analyzed by the constant comparative method of data analysis. The creation of illness narratives added to the understanding of children's and families' experiences. In addition to providing a description of how the symptoms affected children's and families' daily living, findings related to how to health professionals can better understand and approach children's cancer symptoms emerged. When families, physicians, nurses, and other health professionals approached children's symptoms solely as side effects (e.g., nausea) or singular physical and psychological states, children provided minimal description of what they were actually experiencing. However, a greater understanding was achieved when the symptoms were approached as dynamic multidimensional experiences that occurred within a particular context. Children experienced symptoms as feeling states. Critical to children's feeling states were the meanings that children and their families assigned to the symptoms. Viewing cancer symptoms in the context of assigned meanings has implications for how symptoms are assessed and managed. The need to develop a children's symptom assessment tool based on assigned meanings is recommended.
如果医疗保健专业人员希望有效管理癌症患儿的症状，那么就必须拥有一个关于癌症患儿症状的完善且全面的知识库。迄今为止，关于癌症患儿及其家庭如何经历儿童癌症症状仍有许多有待发现之处。因此，在1998年7月至2000年12月期间开展了一项纵向定性研究，从儿童及其家庭的角度探索和描述儿童癌症症状的发展历程。该研究在三个场所进行：参与者的家中以及位于加拿大西部的一家儿科癌症住院部和门诊部。39名患有多种癌症诊断的儿童（4岁半至18岁的男性和女性）及其家庭（父母和兄弟姐妹）参与了该研究。大多数儿童被诊断患有白血病或淋巴瘤（72%），有兄弟姐妹（87%），有父母两人（87.2%），并且在研究结束时仍处于缓解期（90%）。所有儿童均单独接受化疗（56%）或与手术（18%）、放疗（5%）、放疗和骨髓移植（8%）、放疗和手术（10%）以及手术、放疗和骨髓移植（3%）联合进行。使用了多种数据收集方法，包括开放式正式访谈和参与观察。访谈和参与观察数据通过数据分析的持续比较法进行分析。疾病叙事的创建增进了对儿童及其家庭经历的理解。除了描述症状如何影响儿童及其家庭的日常生活外，还出现了与医疗保健专业人员如何更好地理解和处理儿童癌症症状相关的研究结果。当家庭、医生、护士和其他医疗保健专业人员仅将儿童症状视为副作用（如恶心）或单一的身体和心理状态时，儿童对他们实际经历的描述很少。然而，当将症状视为在特定背景下发生的动态多维度体验时，就能获得更深入的理解。儿童将症状体验为感受状态。对儿童感受状态至关重要的是儿童及其家庭赋予症状的意义。在赋予症状的意义背景下看待癌症症状对症状的评估和管理具有重要意义。建议开发一种基于赋予意义的儿童症状评估工具。
