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寻找平衡:儿童癌症父母博客中的长期不确定性。

The Search for Balance: Prolonged Uncertainty in Parent Blogs of Childhood Cancer.

机构信息

1 Holy Family University, Philadelphia, PA, USA.

出版信息

J Fam Nurs. 2018 May;24(2):250-270. doi: 10.1177/1074840718772310. Epub 2018 May 6.

DOI:10.1177/1074840718772310
PMID:29732956
Abstract

Illness blogs are the online narrative expression of the experience of illness and its treatment. The purpose of the present research was to explore, describe, and analyze blog narratives created by parents during their child's cancer experience in the hope that knowledge generated would amplify the voices of these vulnerable families. The study aimed to answer this question: What themes are evident in illness blogs created by a parent when a child has cancer? The purposive sample of 14 parent blogs included publicly accessible, English language narratives that contained descriptions of life with a child who had undergone treatment for acute lymphocytic leukemia (ALL; five blogs analyzed) or neuroblastoma (nine blogs analyzed) in the previous 5 years or who was currently undergoing treatment for these types of cancer. Analysis resulted in discovery of new knowledge of the uncertainty inherent in daily family life during illness and treatment. The parents' vivid depictions of the quest for balance while living with prolonged uncertainty during the illness experience suggested new ways to understand experiences of parents of children with cancer.

摘要

疾病博客是对疾病及其治疗经历的在线叙事表达。本研究旨在探索、描述和分析父母在孩子癌症经历中所创作的博客叙事,希望所产生的知识能放大这些弱势家庭的声音。该研究旨在回答以下问题:当孩子患有癌症时,父母撰写的疾病博客中会出现哪些主题?14 篇父母博客的目的抽样包括公开获取的、包含对过去 5 年内接受过急性淋巴细胞白血病 (ALL) 或神经母细胞瘤 (NB) 治疗的孩子(5 篇分析)或正在接受这些类型癌症治疗的孩子的生活描述的英文叙事。分析结果发现了疾病和治疗过程中家庭生活固有的不确定性方面的新知识。父母在疾病经历中面对长期不确定性时努力寻求平衡的生动描述,为理解癌症患儿父母的经历提供了新的方法。

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