Experiences & needs of parents continuing pregnancy foll

在诊断后选择继续怀孕的无前脑畸形儿童的父母接受了本研究的采访。24名父母、10对夫妇和4名母亲参与了调查，并通过电话采访了参与其护理的保健专业人员，了解了他们的经历和需求。这是一项现象学定性研究，因此访谈记录和分析使用迭代过程。从数据中得出的主题表明，父母并没有主动决定继续怀孕，但对这些人来说，他们的个人和宗教价值观以及与病情相关的不确定性驱使他们继续怀孕。他们指出，家庭成员和保健提供者并不总是支持他们继续工作的决定。从诊断到孩子出生，父母们描述说，他们试图尽可能地让怀孕正常进行，但同时也为婴儿可能死亡的可能性做准备。家长们肯定了相关医疗服务提供者的努力，他们确实尝试并尽可能多地了解前脑全裂症，以便最好地帮助他们的病人。这些研究结果将作为硕士学位论文项目报告，并将提交发表。

Parents of children affected with holoprosencephaly who chose to continue their pregnancy following diagnosis were interviewed for this study. Twenty-four parents, ten couples and four mothers, participated and were interviewed by telephone about their experiences and needs from health care professionals involved in their care. This was a phenomenologic qualitative study and so interviews were transcribed and analyzed using an iterative process. Themes that emerged from the data indicate that parents do not describe making an active decision to continue the pregnancy, but for these individuals, their personal and religious values and the uncertainty associated with the condition drove them to continue the pregnancy. They note that family members and health care providers were not always supportive of their decisions to continue. From the time of diagnosis until the birth of the child with holoprosencephaly, parents describe trying to normalize the pregnancy as much as possible, yet also making preparations for the possibility that the baby may die. Parents identify efforts of concerned health care providers who did try and learn as much as they could about holoprosencephaly in order to best help their patients. These study results were reported as a master's level thesis project and will be submitted for publication.