Abstract / Summary
Individuals living with sickle cell disease (SCD) experience reproductive health challenges related to unpredictable pain crises and hospitalizations. However, little research has examined how SCD-related pain influences dating and reproductive decisions. This qualitative phenomenological study explored dating, reproductive health, and family-planning experiences of young adults with SCD. Semi-structured interviews were conducted with 10 young adults with SCD aged 18–30, eight caregivers, and five healthcare providers. Interviews were transcribed verbatim and analyzed using emergent coding, thematic analysis, and constant comparison across participant groups. Three themes emerged: (1) navigating pain-related disruptions and disclosures in romantic relationships; (2) the physical and emotional effects of pain on intimacy and reproductive health; and (3) the influence of pain and anticipated health risks on family-planning decisions. Participants described uncertainty about disclosing SCD to partners and fears of rejection, misunderstanding, and stigma. Pain crises, hospitalization, fatigue, priapism, and severe menstruation-related pain affected confidence, intimacy, and relationship engagement, contributing to isolation and concerns about a “normal” future. Family-planning decisions reflected partners’ sickle cell trait status and concerns about genetic transmission, infertility, miscarriage, pregnancy complications, and maternal and infant health. Findings support integrating dating, reproductive health, genetic counseling, and family planning into developmentally appropriate SCD pain management and care.