Good-parent beliefs of parents of seriously ill children.
Good-parent beliefs of parents of seriously ill children.
复制标题
DOI：
10.1001/jamapediatrics.2014.2341
复制
发表时间：
2015-01
期刊：
影响因子：
26.1
通讯作者：
Hinds PS
中科院分区：
文献类型：
--
作者：
Feudtner C;Walter JK;Faerber JA;Hill DL;Carroll KW;Mollen CJ;Miller VA;Morrison WE;Munson D;Kang TI;Hinds PS
当孩子患重病时，父母对如何成为好父母的信念会影响他们的医疗决定，更好地理解这些信念可能会改善决策支持。评估父母对 12 种好父母品质相对重要性的看法。在一家儿童医院进行了一项横断面、离散选择的实验。参与者包括 200 名患有重病儿童的家长。对 12 种良好父母属性进行评级，随后使用潜在类别分析来识别具有相似属性评级的父母群体，并确定特定群体的成员资格是否与人口统计或临床特征相关。排名最高的好父母品质是确保我的孩子感到被爱，其次是关注我孩子的健康，做出明智的医疗护理决定，并向医务人员倡导我的孩子。我们确定了 4 组具有类似良好父母属性评级模式的父母，我们将其标记为：孩子感到被爱（n = 68）、孩子的健康（n = 56）、倡导和知情（n = 55）以及精神幸福（n = 21）。与其他组相比，儿童健康组报告了更多的经济困难，受教育程度较低，并且患有新的复杂慢性病的儿童比例更高。父母们认可一系列广泛的信念，这些信念代表了他们认为自己应该如何做才能成为重病孩子的好父母。父母如何优先考虑这些属性的常见模式存在，这表明未来的研究可以更好地了解这些父母中好父母信念的起源和发展。更重要的是，让父母单独参与他们认为成为好父母必须履行的核心职责可能会带来更定制和有效的决策支持。
Parents’ beliefs about what they need to do to be a good parent when their children are seriously ill influence their medical decisions, and better understanding of these beliefs may improve decision support. To assess parents’ perceptions regarding the relative importance of 12 good-parent attributes. A cross-sectional, discrete-choice experiment was conducted at a children’s hospital. Participants included 200 parents of children with serious illness. Ratings of 12 good-parent attributes, with subsequent use of latent class analysis to identify groups of parents with similar ratings of attributes, and ascertainment of whether membership in a particular group was associated with demographic or clinical characteristics. The highest-ranked good-parent attribute was making sure that my child feels loved, followed by focusing on my child’s health, making informed medical care decisions, and advocating for my child with medical staff. We identified 4 groups of parents with similar patterns of good-parent–attribute ratings, which we labeled as: child feels loved (n = 68), child’s health (n = 56), advocacy and informed (n = 55), and spiritual well-being (n = 21). Compared with the other groups, the child’s health group reported more financial difficulties, was less educated, and had a higher proportion of children with new complex, chronic conditions. Parents endorse a broad range of beliefs that represent what they perceive they should do to be a good parent for their seriously ill child. Common patterns of how parents prioritize these attributes exist, suggesting future research to better understand the origins and development of good-parent beliefs among these parents. More important, engaging parents individually regarding what they perceive to be the core duties they must fulfill to be a good parent may enable more customized and effective decision support.