The dilemmas of parents of adolescents and young adults with congenital heart disease
The dilemmas of parents of adolescents and young adults with congenital heart disease
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DOI：
10.1016/s0147-9563(97)90055-8
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发表时间：
1997-05-01
期刊：
影响因子：
2.8
通讯作者：
Gilliss, CL
中科院分区：
文献类型：
--
作者：
Sparacino, PSA;Tong, EM;Gilliss, CL
目的：更好地了解先天性心脏病患儿在青春期和青年期成熟时父母的经历。设计：定性的初步研究。单位：一所大型大学医疗中心的儿科心脏病服务医师。研究对象：8位患有先天性心脏病的青少年和年轻人的父母。干预：使用半结构化访谈指南对每位家长进行单独访谈。结果：我们的研究确定了七个主题——正常的困境、披露的困境、不确定性的挑战、疾病管理的困境和策略、社会整合与社会孤立、疾病对家庭的影响和应对——这些都是父母在青少年和青年时期一直在努力解决的问题。无法确定这些父母描述的经历是否独一无二。结论：正如七个主题所概述的那样，父母经历了痛苦。他们需要帮助，以确定什么是孩子的“正常”，以及如何监测孩子的健康和安全。需要进一步的研究来制定具体的干预措施。
OBJECTIVE: To provide a better understanding of parents' experiences as their children with congenital heart disease mature through adolescence and young adulthood.DESIGN: A qualitative pilot study.SETTING: The physician practices of the pediatric cardiology service of a large university medical center.SUBJECTS: Eight parents of adolescents and young adults with congenital heart disease.INTERVENTION: Each parent was separately interviewed with use of a semistructured interview guide.RESULTS: Our study has identified seven themes-the dilemmas of normality, disclosure dilemmas, the challenge of uncertainty, illness management dilemmas and strategies, social integration versus social isolation, the impact of illness on the family and coping-with which parents have struggled throughout their adolescent's and young adult's life. It was not possible to determine whether the experiences described by these parents are unique.CONCLUSIONS: Parents experience distress, as outlined in the seven themes. They need assistance to determine what is ''normal'' for their child and how to monitor their child's health and safety. Further research is needed to develop specific interventions.