The 2017 Ghana Sickle Cell Quiz & Survey: results show a concerning gap in understanding

Reports suggest that up to 30% of Ghanaians carry the Sickle Cell trait; and that 2% of newborn babies have Sickle Cell Disease. Many children die in their first few years, even before the problem is detected. Those that do not, will have challenging and painful lives ahead of them. 

If adults do not know their status, and how that may affect their future children, they cannot be prepared for what may happen or how to adequately care for a child with Sickle Cell Disease. 

In our 10-question quiz/survey of 2,013 people, 92% of whom were answering from Ghana, the majority (57%) of participants confused carrier genotype “AS”, incorrectly believing that this term indicated having Sickle Cell Disease itself.

A large proportion (39%) of participants thought that one parent carrier meant that a future child could have Sickle Cell Disease. This is not the case; both parents must be carriers or have Sickle Cell Disease.

To help give young Ghanaians the knowledge they need to make informed life choices, we believe the Government of Ghana needs to invest in a national youth education programme in addition to counselling, testing and treatment, and we are ready to help.

 

Why we launched the quiz

Our qualitative national research in 2013 (an internal project) suggested significant mis-understanding of Sickle Cell Disease among young Ghanaians. Some superstitious views and misconceptions were holding young people back from attaining their genetic status and learning more. 

We were inspired by the work and recommendations or Dr Kofi Anie and the Sickle Cell Foundation of Ghana, but we wanted tangible evidence of current levels of awareness and understanding around the subject. And so we ran an online quiz targeting Ghanaians, testing their knowledge of Sickle Cell Disease.

The intention was to generate a dataset which would inform our future efforts, and to surface the areas in which knowledge is lacking. Of course, we wanted to also measure levels of engagement and leave our participants more informed than when they started, so the quiz provided correct answers and basic information to help them.

We specifically targeted people in Accra, in order to inform targeted activity in the city, as this is going to be the starting point for our future campaign.

We are conscious of the self-selecting, digitally-engaged and city-dwelling nature of this audience. However, this data is gathered to inform our own actions in future and our working assumption is that key city-based influencers in society via all media are also active social media users. Therefore by propagating information and messaging through them, we provide a way to reach non-users. 

 

Participant profile

 

The audience can be characterised as a strong female skew with encouraging levels of engagement: 

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  • 69% were female, 30% male and 1% preferred not to say
  • 80% were between 20 and 30 years old
  • 92.4% of respondents participated from Ghana, with 4.5% coming from the USA or UK 
  • 57% of people were from the capital Accra 
  • Average time to complete the quiz was 5 minutes 55 seconds
  • 97% of people who started the quiz completed it
  • 95.3% took part on mobile devices

 

Some good news

The level of engagement and interest in the quiz was extremely high, encouraging for future campaigns, and proving that there is a level of interest in the topic, albeit significantly skewed female. 

  • 95%+ of people understood that Sickle Cell Disease is a blood disorder, is not contagious, and is not sexually-transmitted. This is positive. 
  • 97% of people knew that Sickle Cell is common in Ghana, and the same proportion agreed that knowing your Sickle Cell status was important because it informs life choices rather than being a way to prevent medical problems. 

This showed a marked shift from our focus groups in 2013, potentially linked to increased media coverage and the nature of the Facebook audience. 

 

But very high levels of confusion

The terms around Sickle Cell Disease are confusing but important; mixing up concepts can lead to stigma and we have learned it can hold back decision-making. For instance, people who are aware of their status as carriers of the genetic trait (“AS”) genotype can hesitate to declare their status to friends and future partners if they believe they’ll be categorised as “sick”, which they are not. It can also become a reason not to test for carrier status.

The term “Trait”, is commonly used to describe the Sickle Cell genetic trait, and the fourth question we asked was “What is another term used when describing Sickle Cell Trait?”

The results were concerning: only 43% of people correctly correlated the term ‘Trait’ with the ‘AS’ genotype.

There is a level of complexity deeper than simply relating the two terms. However, misunderstanding the difference between carrying of a genetic trait, with having Sickle Cell Disease itself, is fundamental to understanding one’s own status and the impact of carrier status. This is a major challenge and key to providing people with accurate information. 

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Answering the question “George and Mavis have been dating for 6 months and are considering getting married and having children. George has the Sickle Cell Trait, or "AS" and Mavis does not. What is the chance that their child will have Sickle Cell Disease?”, a significant 39% of the audience believed that there was a chance the child could be born with Sickle Cell Disease, which is not true since it takes two trait carriers to produce a child with Sickle Cell Disease. 

12% of people actively suggested that Sickle Cell Trait caused the painful symptoms of Sickle Cell Disease. 

 

Modest levels of Sickle Cell status knowledge

When asked if they knew their existing status, 27% of people said they did not yet know, with 4% preferring not to say. When the self-selecting nature and likely education levels of the audience considered, this is an extremely high proportion. Simply put, if approximately 30% of this audience do not know their status, the national average is probably much lower.  

 

Audience interests

Google Analytics provides an “In Market Segments” guide which tells us what products and services an audience are currently in the market to buy, based on their browsing history. Perhaps unsurprisingly the top 5 categories were:

  • Dating
  • Employment
  • Education
  • Wedding Planning / Gifts / Events
  • Consumer Electronics

Google Analytics ‘Affinity Segments’ highlights the activities of the audience outside of product purchasing, and identified the following as the top categories:

  • Media & Film
  • News & Celebrity 
  • Sports
  • Tech
  • Lifestyles/Hobbies

This data goes to support a communications strategy that sees Sickle Cell education woven into popular culture in addition to more formal educational methods. 

 

Conclusions

Among this audience, awareness of the existence of Sickle Cell, and its relevance was high. However, there is a clear lack of understanding around the concepts that explain how Sickle Cell Disease occurs.

Given how fundamental this knowledge is, the data presents evidence of a challenge ahead: to educate and support young people in order to increase knowledge and ability to make informed choices. 

Unexpectedly high levels of engagement proved that challenging quizzes work, and suggest interactivity in the classroom could be one way to engage younger students. Amongst this city-dwelling audience, popular culture is a key vehicle for engaging and communicating. 

 

Thanks

A huge thanks is due to everyone who took part, shared and contributed. In particular Noreen Sarhene and Kwame Farkye for their hard work and support, and an apology that it’s taken so long to write up this piece of research. 

 

Disclaimer

The opinions expressed are based on a limited dataset without guarantee of accuracy. This must not be confused for a national representative survey or research to be used directly in decision-making.