Experiences of high risk Korean American pregnant women undergoing prenatal genetic screening and diagnostic testing

Purpose: The aim of this study was to describe experiences of high risk Korean-American pregnant women undergoing prenatal genetic screening and diagnostic testing in the US health care setting.

Method:Participants included 10 high risk Korean-American pregnant women living in the U.S. for a minimum of 5 years.  Individual phone or face-to-face audiotaped interviews were conducted using a semi-structure interview guide. Field notes were also written. Qualitative content analysis was used to analyse data.

Results:  Participants reported facing many difficulties during prenatal visits, such as not receiving or not understanding information about screening and diagnostic testing, risks and consequences of undergoing screening, and potential alternatives/treatments if an abnormality was found.  Compared to their home country, differences in accessing prenatal care and care delivery results in additional stress during prenatal visits. Participants expressed less autonomy in deciding whether to undergone screening and a diagnostic test of genetic conditions.  The ‘words of the mouth’ type information from friends in their communities and family members was the main source for assistance while dealing with their uncertainty.

Conclusion: To provide the optimal prenatal care to a diverse population, incorporating culturally sensitive information and counseling services related to prenatal genetic screening and testing is essential. Health care providers should be more active in promoting a share-decision making and assisting patients to deal with consequences of negative findings.