Tailored Parenting Plans of Young Adults With Sickle Cell Disease or Sickle Cell Trait.
Tailored Parenting Plans of Young Adults With Sickle Cell Disease or Sickle Cell Trait.
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DOI：
10.1097/cin.0000000000000933
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发表时间：
2022-09-01
影响因子：
1.3
通讯作者：
Wilkie, Diana J.
中科院分区：
文献类型：
--
作者：
Oguntoye, Anne O.;Eades, Nyema T.;Aldossary, Dalal;Kuenzli, Grace;Gehling, Gina;Ezenwa, Miriam O.;Johnson-Mallard, Versie;Yao, Yingwei;Gallo, Agatha M.;Wilkie, Diana J.
我们的研究目的是评估个人定制的育儿计划的变异性和准确性，作为生殖健康教育的补充，关于镰状细胞病或镰状细胞性状的遗传。我们提出了来自随机对照试验的试验组数据的二次数据分析。受试者完成了有效、可靠的基于互联网的镰刀细胞生殖健康知识育儿意向问卷。我们创建了一个计算机化的算法，根据参与者的反应，根据他们的育儿偏好和伴侣的镰刀状细胞状态生成定制的育儿计划。为了满足参与者的不同喜好，研究人员制定了31种不同的育儿计划。最常见的计划是为患有镰状细胞疾病的参与者制定的，他们的伴侣有一位血红蛋白AA，他想成为父母，不太可能怀孕，并希望他们的孩子没有镰状细胞疾病。超过一半的参与者要求改变他们的生育行为，以实现他们的育儿目标。这些发现为计算机算法生成的育儿计划的多样性和准确性提供了洞察，这可能进一步指导算法的改进，以产生以患者为中心的、量身定做的育儿计划，作为基于互联网的遗传遗传教育的补充。
Our study purpose was to evaluate the variation and accuracy of tailored parenting plans individually generated as a supplement to reproductive health education on the genetic inheritance of sickle cell disease or sickle cell trait. We present a secondary data analysis of experimental group data from a randomized controlled trial. Participants completed the valid and reliable internet-based Sickle Cell Reproductive Health Knowledge Parenting Intent Questionnaire. We created a computerized algorithm that used participants’ responses to generate tailored parenting plans based on their parenting preferences and partner’s sickle cell status. Thirty-one different parenting plans were generated to meet the variety in the participants’ preferences. The most frequently generated plan was for participants with sickle cell disease who had a partner with hemoglobin AA, who wanted to be a parent, was not likely to be pregnant, and wanted their child to be sickle cell disease-free. More than half of the participants required alteration in their reproductive behavior to achieve their parenting goals. Findings provide insight into the variety and accuracy of computer algorithm-generated parenting plans, which could further guide refinement of the algorithm to produce patient-centered, tailored parenting plans supplemental to internet-based genetic inheritance education.
影响因子：
4.5
作者：
Hors-Fraile S;Schneider F;Fernandez-Luque L;Luna-Perejon F;Civit A;Spachos D;Bamidis P;de Vries H
通讯作者：
de Vries H