Karen Kengne Kamga
H3Africa PI: Dr. Jantina De Vries
Institution: University of Cape Town
Project Affiliation: IFGeneRA
In a small locality in Cameroon, we investigated a large family with an inherited genetic condition known as Fragile X Syndrome (FXS). FXS is the most common genetic cause of intellectual disability and autism spectrum disorder. It can manifest in individuals with intellectual disability (ID) and dysmorphic features like large ears and enlarged testes. This paper reports on evaluating a documentary used to communicate our genomic research findings with a community.
Between March 2022 and January 2023, we conducted a survey with healthcare professionals, educators, and audiovisual specialists from Cameroon’s western and southwest regions. We used frequencies and binomial tests to evaluate and validate the documentary, and the results showed a significant p-value of <0.05.
In this study, we had 42 participants, with 22 of them from the southwest and 20 from the western region of Cameroon. The majority of the participants were female (n=24/42) and had completed at least a secondary education. Their average age was 35.9 ± 8.8 years. Most of the participants were not familiar with genetics, but those English as first language were better able to focus while watching the documentary compared to those in the having French as their first language. This is likely due to language differences in the editing. The documentary received an average rating of 4.4 stars, and participants were willing to share it with their family members. After watching the documentary, participants reported an increase in their awareness of genetic diseases.
In conclusion, this documentary sheds light on the challenges faced by individuals and families affected by Fragile X Syndrome. It also emphasizes the importance of genetic diagnosis in increasing understanding and reducing the stigma surrounding the condition. Similar studies should be conducted using a documentary to explore the genetics of HIV, and the experiences of those living with the virus could help promote adherence to treatment and prevent the spread of drug-resistant strains. Overall, documentaries have the potential to make a significant and positive impact on public health and awareness.
Key words: Evaluation; Documentary; Fragile x syndrome, HIV, Genetics,