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

Authors Tusuubira SK, Naggawa T, Nakamoga V

Received 20 July 2019

Accepted for publication 18 September 2019

Published 2 October 2019 Volume 2019:10 Pages 145—152

DOI https://doi.org/10.2147/AHMT.S223956

Checked for plagiarism Yes

Review by Single-blind

Peer reviewers approved by Dr Nicola Ludin

Peer reviewer comments 2

Editor who approved publication: Professor Alastair Sutcliffe


Sharifu K Tusuubira,1,2 Tracy Naggawa,1 Victoria Nakamoga1

1Uganda Sickle Cell Rescue Foundation, Kampala, Uganda; 2Clarke International University, Kampala, Uganda

Correspondence: Sharifu K Tusuubira
Uganda Sickle Cell Rescue Foundation, Kampala, Uganda
Tel +256 782 964153
Email stusuubira@ciu.ac.ug

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.

Keywords: stigma, discrimination, awareness, sickle cell disease, schools

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