Information management in families who have a child with a genetic condition.
Information management in families who have a child with a genetic condition.
复制标题
DOI：
10.1016/j.pedn.2008.07.010
复制
发表时间：
2009-06-01
期刊：
影响因子：
--
通讯作者：
Angst, Denise B
中科院分区：
文献类型：
--
作者：
Gallo, Agatha M;Knafl, Kathleen A;Angst, Denise B
在有遗传疾病儿童的家庭中，信息管理可能会影响父母如何看待他们的孩子;他们的生育决策;以及他们如何，何时，什么和为什么向其他家庭成员传达病情。本研究的目的是确定独特的信息管理模式，并探讨这些模式与个人和家庭的特点和功能之间的关系。样本由86个家庭的142名父母组成，其中一名儿童患有单基因疾病。四个不同的信息管理模式，不同的父母的理解的遗传方面的条件：准确的理解开放（35%，n = 30），准确的理解选择性（24%，n = 21），不一致的理解（15%，n = 13），和混乱的理解（26%，n = 22）。在两种模式中，准确理解-开放和准确理解-选择性（59%），父母对遗传方面的条件有准确的理解，并且父母对分享信息的看法使两种模式相互区分。在不一致的理解模式，其中包括只有双亲家庭，一个父母有一个准确的理解和一个父母的理解混乱的遗传方面的条件。在混乱理解模式中，父母对疾病的一个或多个遗传方面的理解不准确。信息管理模式与父母教育程度、家庭年收入、健康保险覆盖率有显著差异。这些信息管理模式反映了父母如何访问，解释和传达遗传信息，并可能影响医疗保健提供者与这些家庭互动的有效性。
In families with children with genetic conditions, information management may influence how parents view their child; their reproductive decision making; and how, when, what, and why they communicate about the condition to other family members. The purpose of this study was to identify unique patterns of information management and to explore the relationship between these patterns and individual and family characteristics and functioning. The sample was composed of 142 parents in 86 families in which a child had a single-gene condition. Four distinct information management patterns were identified that varied in the parents' understanding of the genetic aspects of the condition: accurate understanding-open (35%, n = 30), accurate understanding-selective (24%, n = 21), discrepant understanding (15%, n = 13), and confused understanding (26%, n = 22). In two patterns, accurate understanding-open and accurate understanding-selective (59%), parents had an accurate understanding of the genetic aspects of the condition, and the patterns were differentiated from one another by parents' views about sharing information. In the discrepant understanding pattern, which included only two-parent families, one parent had an accurate understanding and one parent a confused understanding of the genetic aspects of the condition. In the confused understanding pattern, parents had an inaccurate understanding of one or more of the genetic aspects of the condition. Statistically significant differences were found between information management patterns and parents' education, family annual income, and health insurance coverage. These information management patterns reflect how parents access, interpret, and convey genetic information and can influence the effectiveness of health care providers' interactions with these families.