Experiences &needs of parents continuing pregnancy foll

Human Genome Research

Investigators

Abstract

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.