This project uses focus groups and a community radio project in an effort to better understand, and engage in dialogue about, the cultural beliefs that are opposing new born screening in Nigeria.
Caption: Adebolajo Adeyemo, University of Ibadan, Nigeria, presents on the project
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Background and cultural complexity
The Yoruba culture – the dominant ethnic group in Southwest Nigeria and the second largest ethnic group in the country – is infused with social and cultural beliefs that can be contrary to mainstream biomedical science. It is thought that these beliefs are a contributing factor to the lack of support and uptake for the screening of new born children for disease in the country. The screening can test for sickle cell disease, critical congenital heart disease, cystic fibrosis, and sixty other conditions. Catching these diseases early is important in order to gather data to persuade policy makers to invest in these areas, and where possible to ensure early treatment for the individual.
Some of the cultural beliefs that are thought to be hampering efforts to screen new borns, although these are only assumptions until the project has taken place, include:
- Belief in voodoo which results in the refusal of body fluids
- Stigmatisation of families whose children are diagnosed with a disease
- Strong belief in destiny leading to a preference for allowing disease to surface on its own
This project aims to better understand cultural beliefs that may hamper the acceptance of new born screening. It also looks to explore the response to scientific principles underlying new born screening. The goal is to balance the social and cultural constructions with known science on the causes of diseases, the basis of screening, available therapeutic choices, and the latest thrust in research. Expected outcomes are:
- Create opportunity for cross-fertilisation of ideas to boost discussion of new born screening within the Yoruba ethnic communities
- Enable the community to examine alternatives to previously held beliefs which may (or may not) lead to softening of the stance against new born screening
- Document the public perspective of new born screening so that future presentation to the community will be done in an acceptable way
- Provide evidence to policy makers on why new born screening is important, how it can be delivered, and what it can tell us about the country’s disease burden.
The activities are targeted at rural, peri-urban and urban dwellers via a multi-step approach. First, observers are embedded in the community and a guide for focus group discussions and conducting interviews is developed based on those observations to ensure that both are conducted in an appropriate way. Focus group discussions and interviews will then take place and recordings from them will be used to develop audio plays which will be broadcast at town hall meetings and on radio shows. These plays will be followed by interactive discussion with biomedical experts.
Cultural and contextual sensitivity
It is important to note that this project is not about imparting scientific knowledge to change behaviour, because we know that is not effective.
“We are not fighting tradition but getting people talking so that we can mutually move things forward. Medical personnel are not there to tell but to answer questions.” - Adebolajo Adeyemo
The project will maintain this ethos throughout and work with community leaders and traditional healers to ensure dialogue is open and collaborative.
There is a limit to the medical treatments that are available in Nigeria, and for many those that are available may not be affordable. This raises an important ethical question when it comes to screening. The aim of this particular project is to gather evidence to influence policy so that more screening and treatment is made available, but in the interim there will be new borns screened for diseases for which no treatment is available and/or accessible. This needs to be carefully managed to ensure treatment is not promised, and expectations not raised beyond what can be offered. The project does not currently make genetic counselling available but this could be an important addition, particularly in a cultural setting where screening can have implications for the parent’s marriage, other marriages in the family, and future pregnancies.
The content on this page forms part of the online report for the 2017 International Engagement Workshop "It's Complicated: navigating scientific complexity in public and community engagement". To read more about social and cultural complexity in engagement visit the social and cultural complexity theme from the workshop. To read more about the full workshop and access the rest of the report including video presentations, discussion summaries, and tools, visit the workshop page.
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