Experiences of prenatal diagnosis of spina bifida or hydrocephalus in parents who decide to continue with their pregnancy

Abstract

The current study aimed to gain an understanding of the perspectives of those parents provided with a prenatal diagnosis of spina bifida or hydrocephalus and who decided to continue with their pregnancy. Qualitative interviews were conducted with 15 parents who learned of their unborn child's spina bifida and/or hydrocephalus in the prenatal period. The interviewer asked parents about their experiences of receiving a prenatal diagnosis and their experience of coping throughout the remainder of the antenatal period. Parents' reactions and experiences fell into five domains: response to diagnosis, experience of medical systems, information gathering, decision-making regarding continuation of the pregnancy following diagnosis and responses of significant others. Each of these domains is explicated. The findings derived from the current study have implications for professionals who provide support to parents during the prenatal period. Future research needs to further explore the common and unique issues for parents living in both urban and rural areas.