Sakyi, Kwame

School of Public Health

PhD

Ghana

Low birth weight, preterm birth and maternal retention in HIV care

HIV-infected postpartum (PP) and breastfeeding (BF) women experience the poorest retention rates (missing appointments and discontinuation of care) in HIV care globally, and Ghana is not an exception. Poor retention increases risk of disease progression, HIV transmission to child ia breastfeeding, and partner via unprotected sex through high viral load. Currently, the PP and BF period is when more than half of all the pediatric HIV infections in low and middle income countries occur. Researchers have articulated the need to focus attention on identifying vulnerable groups that are most at risk of poor retention. In Ghana, HIV-infected PP and BF caregivers with low birth weight and preterm infants may be such vulnerable group. They are often poor, experience social stigma for having small babies, have high depression rates and burdened with sick children. Studies from part of sub-Saharan Africa also show that they also have poor adherence to HIV-treatments. Using a qualitative research design, the objectives of this research are to: 1) describe the experiences of HIV-infected PP and BF women caring for LBW and PB infants, 2) explore how those experiences affect their retention in HIV care and 3) document strategies women are already using to overcome barriers to retention. Fifteen HIV-infected caregivers of low birth weight and preterm infants and 15 with normal birth weight term infants will be interviewed. The study will last three months. The results of the study will inform future interventions to improve maternal retention in HIV care.

Global Health Project Grant Advisor/Mentor: Pamela Surkan, ScD

Ghana is my home. It is where I grew up. I know my away around the culture; yet I was surprised by how I felt when I returned for my dissertation research, as part of my Global Health Field Research Award. On arrival, I was greeted by the heat, the unwarranted honking of cars, and the cacophony of the yells of street vendors. Ensuing days, I had to take showers from a bucket and go fetch water outside of my home when the taps were not flowing. I had to get used to living in my own country again.

As a behavior scientist, I craved for routines, because they help people to cope with a new environment, so when my research started a week after I arrived, I embraced the routine that came along with it. I left home for work by 5:30 am and returned about 6pm; two hours each way. I met with my two research assistants and planned each day. We interviewed postpartum women living with HIV. The rhythm of going to work, meeting my research assistants, and doing what I was good at—interviewing—made adjusting in Ghana easier.

The contours of my physical adjustment were not as deep as the emotional and intellectual adjustments I had to make. My research was on HIV. I wanted to learn how caring for low birth weight and preterm infants affected HIV-infected mothers in adhering to their anti-retroviral therapy drugs. This was my first HIV-related field work. I was used to talking to mothers about their newborns, a subject that often conjured joy in the mothers, but HIV was different.

Emotionally, I was unprepared for the tears mothers had when they talked about their HIV diagnosis; struck by how many of the mothers had not disclosed their HIV status to their partners, and how utterly numb some were when they heard that their baby was HIV positive. Intellectually, I didn’t understand why the unprecedented access to anti-retroviral therapy in Ghana, which has made HIV no longer a death sentence, had not trickled down to make HIV disclosure easier. Why should women in the 21st century still be afraid to tell their partners about their HIV status? Ethically, don’t the men deserve to know the partner’s HIV status?

More transforming for me personally and scholarly was this event. One day, I walked with a participant to the lab where children get tested for HIV. The lab couldn’t perform the test because they lacked water. She wanted to get her child vaccinated, so we went to the postnatal clinic. The person retrieving the medical folder demanded the mother buys him malt (soda) before he will do his work. She pleaded, but he would not budge. I was angry and threatened him that if he did not do his job, I will tell my PI, who was the head of his unit. He begrudgingly gave her what she needed. Then, we went to the vaccination station, but one of the two vaccines the child needed was out of stock, so she was told to come back another day. I felt they just wasted her day. I was also angry and frustrated that day. I thought: “Why should a child be turned away to receive a health service because there is no water?  

The more I thought about the health system challenges and HIV disclosure issues, I realized how silly I had been to just focus on the individual level attitudes, beliefs and experiences in my work. I began to understand the struggles my participants faced with adhering to their ARTs within the context of their larger social experiences. For example, I began to understand why so many of the mothers living with HIV who had low birth weight infants were reporting missing their ARTs when their babies were admitted to the neonatal intensive care unit. Many missed their drugs because they forgot to carry it with them when their baby was admitted, but they couldn’t tell a partner to bring it to them because they had not disclosed their status. 

My anger and frustrations with the health systems issues reminded me all along what I have thought should be my eventual career path—return to Ghana and contribute to solving problems that impacts mothers and children. After all, Ghana is still my home. It is where I grew up.

Carrying water to my place of residence on left:

My two research assistants and I:

Practicing interview questions before interview:

Visited a nutrition research site to foster future collaboration:

Entering data after interview:

Met Herat Church Event; liked her dress as it reminds me of Ghanaians Vibrant Personality:

People

Caitlin Kennedy, PhD MPH,BA

Co-Director, MPH concentration in Social and Behavioral Sciences in Public Health; Associate Director, Center for Qualitative...

Noreen Hynes, MD MPH

Director, Geographic Medicine Center of the Division of Infectious Diseases

Joanne Katz, ScD MS,BSc

Associate Chair, Director of Academic Programs

Yukari C. Manabe, MD

Associate Director of Global Health Research and Innovation

Stefan Baral, MD MPH,MBA,MSc

Director, Key Populations Program

Robert Bollinger Jr., MD MPH

Director, Johns Hopkins Center for Clinical Global Health Education (CCGHE); Associate Director, Johns Hopkins Center for Global...
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November 2018

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