父母对疾病的不确定性：应对围绕一种“罕见病”的不确定性。
Parental uncertainty in illness: managing uncertainty surrounding an "orphan" illness.
作者信息
Kerr Anna M, Haas Stephen M
机构信息
Department of Communication, University of Kentucky, Lexington, KY.
Department of Communication, University of Cincinnati, Cincinnati, OH.
出版信息
J Pediatr Nurs. 2014 Sep-Oct;29(5):393-400. doi: 10.1016/j.pedn.2014.01.008. Epub 2014 Jan 23.
UNLABELLED
Parents of children with complex chronic illnesses experience substantial uncertainty that is heightened when the condition is an "orphan" illness not belonging to one medical specialty. The current study explores uncertainty experienced by parents of children with "orphan" illnesses requiring multidisciplinary care.
METHOD
Participant-observations over 13 months (n=200) were combined with questionnaire data (n=55) to assess parental uncertainty at a multidisciplinary pediatric clinic.
RESULTS
Five unique types of uncertainty emerged from a grounded analysis (Glaser & Strauss, 1967), revealing 11 interrelated uncertainties these parents experience. Findings can help providers understand parents' uncertainty and assist in family-centered decision-making.
未标注
患有复杂慢性病的儿童的父母经历着巨大的不确定性，当病情是不属于某一医学专科的“罕见病”时，这种不确定性会加剧。本研究探讨了需要多学科护理的“罕见病”患儿父母所经历的不确定性。
方法
在一家多学科儿科诊所，将13个月内的参与观察（n = 200）与问卷调查数据（n = 55）相结合，以评估父母的不确定性。
结果
通过扎根分析（Glaser和Strauss，1967年）得出了五种独特的不确定性类型，揭示了这些父母所经历的11种相互关联的不确定性。研究结果有助于医疗服务提供者理解父母的不确定性，并协助以家庭为中心的决策制定。
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