Andrea Johnson, Ridwaanah Ali, Ekaterina An, Carolyn Wilson, Kimberley Widger
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引用次数: 0
摘要
目的：对晚期癌症儿童和青少年的生活质量（QOL）体验的研究一直不足。提高这类人群的 QOL 是其医疗保健的主要目标，但很少有研究能确定影响其 QOL 的各个方面。本综述旨在从晚期癌症儿童和青少年的心声中确定 QOL 的主题：方法：本综述采用元人种学的方法综合了各项研究的数据，以便从新的概念上理解晚期癌症儿童和青少年生活的重要意义：我们的分析确定了与晚期癌症儿童和青少年相关的 QOL 主题：(1) 感受支持和希望支持他人；(2) 重建正常生活；(3) 痛苦和情绪困扰；(4) 新视角；(5) 保持自主性；(6) 时间意识。这些主题与通常适用于儿童和青少年癌症患者的传统 QOL 维度有所不同：这项研究具有新颖性，因为其开发的主题源自晚期癌症儿童和青少年的直接声音和表达的观点。这是在理解这一特定情况下的 QOL 以及测量这一人群的 QOL 方面迈出的重要的第一步。
Children's and adolescents' perspectives on living with advanced cancer: A meta-synthesis of qualitative research.
Purpose: The quality of life (QOL) experiences of children and adolescents living with advanced cancer have been under-explored. Enhancing QOL for this population is a dominant goal of their healthcare yet, there has been little research identifying aspects that impact their QOL. The purpose of this meta-synthesis was to identify themes of QOL informed from the voices of children and adolescents living with advanced cancer.
Methods: This meta-synthesis utilized meta-ethnography to synthesize data from individual studies in order to develop new conceptual understanding of what is important to children and adolescents about their lives when living with advanced cancer.
Results: Our analysis identified themes of QOL relevant to children and adolescents with advanced cancer: (1) feeling supported and wanting to support others; (2) re-establishing normal; (3) suffering and emotional distress; (4) new perspectives; (5) maintaining autonomy; and (6) awareness of time. These themes differed from more traditional dimensions of QOL often applied to children and adolescents with cancer.
Conclusion: This research is novel as its developed themes originated from the direct voices and expressed perspectives of children and adolescents living with advanced cancer. This is a significant initial step toward both understanding QOL in this specific context and the measurement of QOL for this population.
期刊介绍：
Quality of Life Research is an international, multidisciplinary journal devoted to the rapid communication of original research, theoretical articles and methodological reports related to the field of quality of life, in all the health sciences. The journal also offers editorials, literature, book and software reviews, correspondence and abstracts of conferences.
Quality of life has become a prominent issue in biometry, philosophy, social science, clinical medicine, health services and outcomes research. The journal''s scope reflects the wide application of quality of life assessment and research in the biological and social sciences. All original work is subject to peer review for originality, scientific quality and relevance to a broad readership.
This is an official journal of the International Society of Quality of Life Research.
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