Open Access Dissertation
Date of Award
Heather E. Dillaway
Reproductive health among women with sickle cell disease remains a critical gap in the literatures on sickle cell disease, reproductive health, and women's health. Sickle cell disease (SCD) is a condition with a complicated clinical sequelae, accompanied by a myriad of health complications, unremitting, extreme pain, and frequent hospitalizations. The purpose of this study was to explore the meaning and lived experiences of reproductive health and health care among women with sickle cell disease.
Using a qualitative, phenomenological methodology, this study captured the authentic voices of 28 adult women with sickle cell disease and their perceptions and experiences of reproductive health and health care. Nearly all women in this study were advised to avoid having biological children because of the concerns for their health or that they would have a child with sickle cell disease. Despite this recommendation, participants exercised agency and looked to their embodied experience living with sickle cell disease when determining whether they were healthy enough for pregnancy and childbirth. Participants also described carrying a reproductive burden due to their genetic characteristics to ensure they did not "pass" sickle cell disease on to their children. Their motivations were derived from their desire to prevent their children from "suffering" the way they had, both from the physical symptoms and social judgment that accompanies sickle cell disease. These findings illustrate the need for women with sickle cell disease to receive reproductive health care that takes into consideration their particular health characteristics in regards to gynecological care, contraception and prenatal care to avoid potentially health-harming recommendations that may exacerbate sickle cell disease symptoms.
This study extends existing ideas concerning the embodied risk and reproductive health from women who develop or contract risk, to those who were born with it. This information may also encourage more appropriate reproductive health care, and improve the understanding regarding the significance of reproductive health in general and within the context of illness among health care providers.
Ross, Paula Thompson, "Risking Reproduction: Reproductive Health Among Women With Sickle Cell Disease" (2013). Wayne State University Dissertations. 740.