Lived experiences of pregnancy among women with Sickle cell disease receiving care at Mulago hospital : a qualitative study

Abstract

Background: Sickle cell disease (SCD) is the commonest hereditary disorder and affects 30 million people worldwide. Pregnancy is a potentially serious condition among women with SCD and can leave them even more fragile and insecure. Objective: This study explored the lived experiences of pregnancy among women with SCD receiving care at Mulago National Referral Hospital (MNRH). Methodology: This was a qualitative, phenomenological study. The study was conducted from October to December 2018 on 15 participants who were women SCD receiving care at MNRH with the experience of pregnancy. In-depth audio recorded interviews were conducted to collect data from women who were pregnant or had ever been pregnant aged 16 to 38 years of age with SCD receiving care at MNRH. Recorded data was transcribed and analyzed using content thematic approach. Results: This study revealed that pregnant women with SCD faced negative health care experiences but also difficult and painful individual lived experiences of pregnancy. Women with SCD in our study had knowledge of most complications of pregnancy among women with SCD and relied more on health workers, relatives and friends to gain knowledge of complications of pregnancy among women with SCD. Facilitators for health care utilization among women with SCD included: desire to have a baby, prior good experience, social support, professional care from health workers and higher level of health facility with specialized care. The major barriers for health care utilization among women with SCD were reported as: caution from health workers, limited or lack of partner support, inaccessible health care services and negative institutional factors. ix

Conclusion: Pregnant women with SCD receiving care from MNRH with great expectation and in fear of being further weakened by the disease. Their experiences were in general negative at both individual, social and health system levels. Recommendation: There is need to create awareness about the challenges encountered by women with SCD and to formulate and implement local guidelines for management of pregnant women with SCD in order to improve their health care.