Sexual reproductive health experiences, and service needs of adolescent girls and young women with sickle cell disease at Mulago Hospital

Abstract

Sickle cell disease (SCD) affects multiple aspects of Adolescent girls and Young Women’s (AGYW) lives, yet their sexual and reproductive health (SRH) is often overlooked.Significant physical, and psychological outcomes are associated with neglected sexual reproductive health.There is limited data on the SRH of AGYW with chronic diseases including sickle cell disease in Uganda. Objective: To explore the sexual and reproductive health experiences and assess the reproductive health service needs of adolescent girls and young women with SCD attending Mulago Hospital. Methods: A parallel convergent mixed-methods study design was used. Quantitative data were collected from 368 AGYW with SCD using a survey questionnaire adapted from the World Health Organization’s illustrative questionnaire for interview surveys with young people. Qualitative data were collected using in-depth interviews (IDI) with 26 AGYW and Key informant interviews (KIIs) with six health care providers. Quantitative data were analyzed using STATA version 17 and summarized using frequencies and percentages. Qualitative data were analyzed using content thematic approach. Results: Among the 368 participants, N=278 (76.6%) were aware of the growth and developmental changes which occur at puberty. N=218 (59%) attained thelarche above 15 years, N=299 (82.1%) perceived their thelarche delayed when compared to their peers without sickle cell disease, N=204 (55%) perceived themselves shorter and n=253 (68%) perceived themselves smaller in weight and hip size. For menstrual experiences; 29 (7.8%) participants had never had menarche, late menarche was reported by N=235 (75.5%) and painful crises during menstruation N=156 (46.7%).Overall, 121 (33.06%) reported sexual activity; N= 63 (17.4%) reported sexual abuse experiences, N=296 (80.4%) had never been screened for HIV and only N=97 (26.7%) had received HPV vaccination. Pregnancy experiences were reported by 47 (38.8%) among those who were sexually active, during pregnancy; N=30 (63.8%) had anemia, N=26 (55.3%) painful crises, preterm births N=22 (46.8%), Still births N=10 (21.2%), spontaneous abortions N=24 (51.1%).Key positive SRH experiences included; support from family members and friends, the joy of motherhood, supportive institutions( school and health). Negative experiences were predominant and they included; poor body image, anxiety due to delayed puberty, shortened life expectancy influenced sexual behaviours, societal stigma, and intimate partner violence while menstrual experiences were characterized by painful crises. Pregnancy experiences were marked by poor outcomes, pregnancy complications, unintended pregnancies, limited psychosocial support and infertility. Nearly all respondents expressed a desire for adolescent responsive SRH services to be integrated within routine sickle cell care. Services such as comprehensive SRH information (99.4%), STI screening and testing (99.46%). Conclusions and Recommendations: The shared sexual and reproductive health experiences of AGYW living with SCD were predominantly negative, with significant gaps in care accounting for the high proportion of unmet SRH service needs. Health systems should integrate adolescent-appropriate SRH services into routine sickle cell care, improve menstrual health management and strengthen psychosocial support systems.