To Join Or Not To Join? A Case Of Sickle Cell Clubs, Stigma And Discrimination In Secondary Schools In Butambala District, Uganda

BACKGROUND: People living with sickle cell face a lot of stigma and discrimination in Uganda. This stigma is as a result of the lack of the general conceptualization of this condition. For students, the stigma is often due to their differences like jaundice, delayed sexual maturation, and physical growth. This makes individuals with SCD targets for teasing and bullying. This study assessed the knowledge and perception among secondary school students in a rural district of Butambala at nine selected schools. The study also evaluated the use of sickle cell clubs as a tool for behavior change towards the associated stigma and discrimination. METHODS: A school-based cross-sectional study design was used to assess knowledge and perception towards sickle cell disease in secondary schools in Butambala district using self-administered questionnaires prior to and after set up of the sickle cell clubs. RESULTS: Out of the 375 student participants (59.5% female, 40.5% male) the majority (87.5%) were below 18 years; 68% of the respondents did not know that sickle cell is a genetic condition; 87.5% of the respondents highlighted that it is important for people with SCD to attend school; 54.4% of the respondents reported that people with SCD should not be given equal rights, while 56.0% of the respondents noted that people with SCD should not socialize. CONCLUSION: It is evident the there is a big gap in sickle cell awareness among secondary school students coupled with a high level of stigma and discrimination. Sickle cell clubs have a positive effect towards behavior change while providing SCD knowledge and information.