Experiences of Thai Women at Risk to Having Offspring with Severe Thalassemia

Abstract

Pregnant women at risk to having offspring with severe thalassemia require screening and prenatal diagnostic tests. These are stressful events which may cause emotional distress throughout pregnancy. Previously, there was no clear explanation of methods used by the women in managing their emotional responses, and support specifically designed to assist Thai women was needed. This phenomenological study aimed to gain a deeper understanding of the lived experiences of Thai women at risk to having offspring with severe thalassemia. Data were collected in Khon Kaen province between November 2017 and October 2018 through in-depth interviews with 15 informants. Data were analyzed using the processes proposed by Cohen, Kahn, and Steeves (2000). Member checking and peer debriefing were conducted to establish the trustworthiness of the study. The findings demonstrated four themes from the experiences of Thai women at risk to having offspring with severe thalassemia, reflecting their emotional responses, management towards the responses, and support needed. The first theme was “long-lasting fear” including fear of having a baby with severe thalassemia, fear of harms on a baby, and fear finally replaced by happiness or a tragedy. The second theme was “defeating one's fear.” This was achieved through staying away for a while, making clear with the unknown, strengthening one’s mind, and depending on a spiritual anchor from religion or supernatural power. The third theme was “protecting a baby” through nourishing the baby, terminating a pregnancy, and allowing a baby to be born with the disease. The last theme was “desiring enormous professional support” in terms of information needs, emotional support, and positive experiences with service delivery. This study provides essential knowledge for nurse-midwives to help understand the emotional responses of Thai women at risk to having offspring with severe thalassemia. It also provides the nurse-midwives with more understanding of management the women use and the professional support they need. The knowledge gained can be used as basic information to develop women-centered genetic counseling and to improve the quality of nursing care for Thai women who experience fear throughout the screening and diagnosis processes.