Experiences & needs of parents continuing pregnancy foll

在这项研究中，受无前脑畸形影响的儿童的父母在确诊后选择继续怀孕的父母被采访。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他们护理的卫生保健专业人员的经验和需求。这是一项现象学的定性研究，因此采访被转录并使用迭代过程进行分析。从数据中发现的主题表明，父母并没有描述做出了继续怀孕的积极决定，但对这些人来说，他们的个人和宗教价值观以及与这种情况相关的不确定性促使他们继续怀孕。他们指出，家庭成员和医疗保健提供者并不总是支持他们继续下去的决定。父母描述说，从确诊到孩子出生之前，他们试图尽可能使怀孕正常化，同时也为婴儿可能死亡的可能性做好准备。父母确认关心的医疗服务提供者的努力，他们确实尝试并尽可能多地了解无前脑畸形，以便最好地帮助他们的患者。这些研究成果被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.