Higgins S S, Kayser-Jones J
University of San Francisco School of Nursing, Children's Hospital of Oakland, California, USA.
J Pediatr Nurs. 1996 Jun;11(3):152-60. doi: 10.1016/S0882-5963(96)80048-0.
The purpose of this prospective qualitative study was to investigate factors that influenced 15 parental decision-making situations regarding pediatric heart transplantation for children with end-stage heart disease. Twenty-four parents of 15 children, ranging in age from 1 day to 16 years, who had been given the heart transplantation option were inducted into the study as a convenience sample. All 24 parents were either interviewed (n = 18) or observed at some point during the decision-making process. Data collection strategies included participant observation and in-depth interviews. Data were coded into relevant themes and then clustered into categories; concurrent coding and analysis continued until new categories were no longer found. Predominant factors identified that influenced parental decision making were (a) psychological/emotional, (b) familial, and (c) social factors, and (d) physician endorsement of a treatment option. In 10 of the 15 situations, family beliefs and values were the main parental decision-making factors. Ten families chose transplantation for their child; 5 decided against the procedure. Pediatric nurses have central roles in facilitating parent-health professional communication in complex decision making concerning treatment alternatives of children.
这项前瞻性定性研究的目的是调查影响15例患有终末期心脏病儿童的家长关于小儿心脏移植决策情况的因素。选取了15名年龄从1天到16岁不等、已被告知有心脏移植选择的儿童的24名家长作为便利样本纳入研究。在决策过程中的某个时间点，所有24名家长要么接受了访谈（n = 18），要么被观察。数据收集策略包括参与观察和深入访谈。数据被编码为相关主题，然后聚类为类别；同时进行编码和分析，直到不再发现新的类别。确定影响家长决策的主要因素有：（a）心理/情感因素，（b）家庭因素以及（c）社会因素，（d）医生对治疗方案的认可。在15种情况中的10种情况下，家庭信念和价值观是家长决策的主要因素。10个家庭为孩子选择了移植；5个家庭决定不进行该手术。在涉及儿童治疗选择的复杂决策中，儿科护士在促进家长与医疗专业人员的沟通方面发挥着核心作用。
