Sickle cell disease – the patient’s perspective

Author: Sophie Uyoga – KEMRI Wellcome Trust Research Programme, Kenya

Sickle cell disease (SCD) is an inherited red blood cell disorder that results in the formation of abnormal haemoglobin. There are over 300,000 children born with SCD every year with most births occurring in sub-Saharan Africa. There is currently a lot of scientific research on the disease, and it is important that the researchers have a better understanding of what the patients experience in this community, and their views on the on-going research in order to develop a better working relationship with the research participants.

We have conducted 4 focus group discussions (FGDs) and 2 in-depth interviews (IDIs) with the patients and their caregivers to share experiences. The discussions highlighted the challenges and successes that the affected families experience. We also visited 7 homesteads for the contextualization of the key messages generated from the discussions. The content for the 28-page comic book that we have developed has been drawn from their experiences and will be targeted for children aged 7-14 years attending the sickle cell clinic to aid their understanding of the disease at an early age. We also have used our school engagement programme to distribute the comic book at the local schools where the patients come from as a way of creating awareness about the disease.

The presentation will showcase the comic book and highlight the use of engagement activities to develop awareness materials that will raise the profile of the social issues and challenges that people living with SCD experience.

The author has not yet submitted a copy of the full paper.

Presentation type: Visual presentation
Theme: Transformation