Using Uganda Sign Language to Obtain Informed Consent and assent Among Adolescents Living with Deafness in Research: Experiences and Lessons Learned from a Mixed- Methods Study in Wakiso District, Uganda

Abstract Background Achieving effective informed consent is particularly challenging among people living with disabilities, including deafness. There is limited literature on how effective communication can be achieved using sign language between researchers and participants with deafness. This paper presents our experiences obtaining informed consent among adolescents with deafness in a study on access to sexual and reproductive health (SRH) education and services (SRH) among adolescents living with deafness in Wakiso District, Central Uganda. Methods Between August 2022 and January 2023, a mixed-methods cross-sectional study assessed SRH knowledge, needs, and barriers to access among adolescents with deafness attending a secondary school for the deaf in Wakiso District. Informed consent and assent were obtained using Ugandan Sign Language (UgSL), with trained sign language interpreters facilitating communication with participants, parents, and guardians. Lessons learned: Three key challenges emerged: the cultural sensitivity of SRH topics, whereby discussions of sexuality, menstruation, and reproductive health carry stigma and are considered taboo in many Ugandan communities. This creates privacy and confidentiality risks within multi-step consent processes, as participation itself may signal health-seeking behaviour that adolescents wish to conceal; translating scientific concepts accurately into sign language without losing meaning is technically demanding; and there are no national research ethics guidelines in Uganda governing informed consent procedures for populations with deafness. Recommendations: Research teams should invest in rigorous training of sign language interpreters, pilot all consent materials with deaf communities, and incorporate visual and video aids in UgSL to standardise concepts and improve understanding. At the national level, Uganda requires clear standards for UgSL proficiency in research and healthcare settings to ensure inclusive and ethically sound engagement with populations with deafness.