Risking Reproduction: Reproductive Health Among Women With Sickle Cell Disease

RISKING REPRODUCTION:REPRODUCTIVE HEALTH AMONG WOMEN WITH SICKLE CELL DISEASEbyPAULA THOMPSON ROSSAugust 2013Advisor: Dr. Heather DillawayMajor: SociologyDegree: Doctor of PhilosophyReproductive health among women with sickle cell disease remains a critical gap in theliteratures 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 healthcomplications, unremitting, extreme pain, and frequent hospitalizations. The purpose of thisstudy was to explore the meaning and lived experiences of reproductive health and health careamong 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 theirperceptions and experiences of reproductive health and health care. Nearly all women in thisstudy 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, participantsexercised agency and looked to their embodied experience living with sickle cell disease when determining whether they were healthy enough for pregnancy and childbirth. Participants alsodescribed carrying a reproductive burden due to their genetic characteristics to ensure they didnot “pass” sickle cell disease on to their children. Their motivations were derived from theirdesire to prevent their children from “suffering” the way they had, both from the physical