“If it doesn’t work, why do we blame the community?”

Q&A with Ghanaian medical anthropologist Professor Margaret Gyapong

With Unlimit Health’s commitment to supporting country ownership, Communications Advisor, Anna Georgeson, discusses with Professor Gyapong the importance of listening to communities and the crucial role of social science in influencing health policy decision-making.

Why did you choose social science as a career path?

Prof Gyapong: I started off wanting to be a lawyer. I loved to read. Then I fell sick at some point growing up, and I went to the hospital. I met a smart lady and asked, “Who is she? What does she do in the hospital?”. And they said, “She’s a dietician”. I thought, “I want to be a dietician”.

My first degree was in HomeScience. However, I found out after being admitted to the course that to become a dietician, you needed to do further studies outside Ghana. My mother, then a widow, couldn’t afford it, so I ended up doing my national service in the Community Health Department of the University of Ghana Medical School.

Whilst there, I did a piece of work on malaria. It was laboratory and community work, and the PhD student left the community aspect to me and said, “Just go and talk to the women”. I enjoyed it.

I then started looking out for courses to do a Masters in community health because public health was not a big concept at that time. But shortly after getting married, my husband was posted as study paediatrician to Ghana Vitamin A Supplementation Trials at the Navrongo Health Research Centre. He told them: “I have a wife who is a social scientist. If you don’t employ her, I’m not staying!”. I ended up going to Navrongo training young people to collect, manage, and analyse social science data.

While in Navrongo, we had a visit from Christian Lengeler of the Swiss TPH. He said, “Have you considered doing medical anthropology?” and I asked, “What is that?”. I didn’t know what it was. He said, “It’s a course that tries to understand what people mean when they say they are not well”.

In 1994, Brunel was number one for medical anthropology in the UK. I applied and I got a grant from the World Health Organization (WHO) TDR to do my Masters.

You have a background in lymphatic filariasis (LF), what sparked your interest in female genital schistosomiasis (FGS)?

Prof Gyapong: I’m not a ‘schisto’ person, I have mainly done work on LF, but I happened to be working with the COUNTDOWN project from the Liverpool School where the entire programme was LF and ‘schisto’. A meeting was organised on FGS. I had never heard of it before.

At that meeting, I shared my experience of how I worked with other researchers and programme people to put LF on the health agenda and said, “Whatever this thing is, these are some of the steps we can use to put it on the health agenda”. As I was reviewing the literature, I suddenly remembered a monograph a colleague and I had done for WHO where we had talked about FGS. I had forgotten about it!

When we came back, I decided to conduct a small study in Ghana to find out whether people knew about FGS. In one of the study areas where we were doing the LF work, we went into the communities to find out about ‘schisto’ and then FGS. The people knew about ‘schisto’ but not FGS – “What are you talking about? If any woman shows these signs, then it’s a sexually transmitted infection”. That’s where my interest started.

Have you found local belief systems to impact FGS awareness-raising activities or how people respond to their symptoms?

Prof Gyapong: You know us women, anything to do with our sexuality is private. And it’s the same with some of the women I engaged with. For me, the most touching thing is the teenagers. I always use this quote from a young girl who said, “I went to the hospital and presented with this, and the nurse was annoyed with me and said I was a bad girl”. By the time she got home, her mother knew about it, and she said, “I was so sad, I’ll never go to a health facility again”.

When we conducted some focus group discussions, people said they knew about schisto, but not FGS. “Boys pass urine so maybe boys get it, but not the women” and they say “Not the women” because if a woman is passing blood outside her menses, their belief is that it is residue from her menses. To them, it is not possible that women would just pass blood through urine if it were not their menses.

Even some of the health workers said “Women passing blood in their urine? No, it’s usually the men”. They think of it as a male thing. We need health workers to better understand what is happening, so they don’t misdiagnose people who arrive at the health facility with the condition.

How can we work better with communities to understand and support their needs?

Prof Gyapong:

“The most important thing is to listen to the community. Give them respect. We shouldn’t just go fishing for information and not do anything about it.”

For many people, the data is published and that’s it. It’s important to ask yourself, “What do I do with this information?”. For the FAST package work that we did, we used the information to design job aids and booklets for small children. We are taking some of the misconceptions from the qualitative studies and saying “This is what you think the problem is, this is the real issue” to better inform them about it.

What’s your view on tailoring implementation to the local context?

Prof Gyapong: It’s something that a lot of our funders need to be paying attention to because something may work in a particular country or context but bringing it to another country may not be the same. Sometimes people are in a hurry and don’t take their time to understand the context. “I’m here for just a few days I have to get this done”. It’s taken out of context. As a qualitative researcher, you must know that the longer you stay the better you understand the nuances that are going on in the community.

“I think we need to understand that the people in the communities know what they are doing and if we make them feel that we want to learn from them, instead of taking away from them, they’ll see us as partners.”

Sometimes we come in, thinking we know, but half the time we don’t.

There’s a term in qualitative research known as ‘handing over the stick’. Allow them. They have been there forever, since before you and me, so ask them a simple question – “How can we solve this together?” instead of saying “I have brought you an idea and I think you need this”. If it doesn’t work, why do we blame the community?

How does research influence real change on both the national and global scale?

Prof Gyapong:

“In recent times, the people at the country level have engaged more than before. Programme managers are challenged to be at the forefront of things instead of being passive.”

The use of implementation research which engages stakeholders throughout the process, disseminates research results after each cycle and implements and uses research to inform programme implementation has changed over the years.

For example, we conducted a study on malaria after Ghana stopped using chloroquine and we were looking at the use of another malaria intervention. As part of the discussion, we found that some people were producing chloroquine because people still felt that it worked. When we presented the results, the director of policy was in the room, and he quickly issued a statement, and the press was there. From then on, any facility found dispensing it would be sanctioned, this was headline news. If we had waited until the end of the study, we may not have even thought of presenting that information, we may have been looking at the outcomes instead of the processes and the issues that we are picking up.

What has been the most fulfilling aspect of your career?

Prof Gyapong: When I pick up the strategic plan of the NTD or malaria programme and see them cite research that has been done to support the programmes, it just warms my heart that the research results have been put to use. For instance, when the new schistosomiasis guidelines were published by WHO and I saw in the revision that the unused medication from MDA could be left at the health facility, I was excited. Before, all districts had to return leftover medication to the national level and sometimes medication expired.

We also made a lot of noise ensuring some NTD indicators were in the National Health Information System. Anything that gets reported gets attention.

So, when FGS was getting popular on the health agenda, we pushed for indicators for genital schistosomiasis to be included in the system. Today the health system reports on genital schistosomiasis, and it warms my heart.