Lived Experiences of Mothers Living with HIV with Newborns in the NICU and Implications for Birth Preparedness and ART adherence

Ashley McCullough, BS, CWP, Kwame Sakyi, PhD, MSPH, Prince Owusu, MPhil and Kristin Watkoske, BS, (1) Oakland University, Rochester, MI, (2) Center for Learning and Childhood Development-Ghana, Accra, Ghana


Background: To date, there is limited research about the lived experiences of mothers living with HIV in Sub-Saharan Africa with newborns in the neonatal intensive care unit (NICU). Studies have shown that caring for low birthweight (LBW) newborns can contribute to psychological difficulties which may also impact antiretroviral therapy (ART) adherence

Methods: Fifteen in-depth qualitative interviews were conducted with postpartum women living with HIV in Accra, Ghana. Participants had LBW newborns and were recruited from two tertiary-level hospitals: Korle Bu Teaching Hospital and Ridge Regional Hospital. The data were analyzed using an inductive approach to identify major themes.

Results: Participants lived experiences included stress, worry, and fear of HIV transmission. Their experience resulted from poor linkage to HIV care, non- disclosure of HIV, and forgetting ART. An effect of these experiences was ART nonadherence. Non-disclosure of HIV made it challenging for some mothers to retrieve their medication from home during prolonged admission. Most participants reported equal treatment by health workers regardless of their HIV status. Many did not report experiencing HIV-related stigma at the NICU. Mothers indicated the need for: (1) antenatal education on ART preparedness, and (2) better linkage to care for postpartum mothers with newborns in the NICU in order to combat ART nonadherence and the feelings of stress, worry, and fear. 

Conclusion: This study supports the need for better linkage of care between the adult HIV clinic and the clinic in the NICU. Future educational sessions for antenatal mothers should belabor the importance of ART preparedness.

CLCDG researcher, Jennifer McCullough shares her work on ART adherence and CD4 cell count at the American Public Health Association Meeting in San Diego, CA

CLCDG researcher, Jennifer McCullough shares her work on ART adherence and CD4 cell count at the American Public Health Association Meeting in San Diego, CA


work in HIV seeks to reduce HIV infection and its associated morbidity and mortality in children. We conduct research to identify barriers to caregivers being staying in HIV care (retention) to receive continuous treatment. These factors have included stigma, transportation challenges, caregiver burden, and caring for sick babies. We also focus on identifying interventions that will reduce retention and improve maternal CD4 cell count.

In one study, we demonstrated that the odds of having a high CD4 cell count was over three times higher among those who attended two or more antiretroviral counseling sessions with a support person (called a monitor) compared to those who did not. We also showed that the choice of an adherence support person (such as a husband or friend) is not related to high CD4 cell count for patients. Our researchers have recommended that to increase the wellbeing of pregnant and postpartum women living with HIV, efforts should focus on increase the proportion of women attending two or more counseling session with a monitor.

We have also published research on the challenges caregivers with low birthweight face in adhering to antiretroviral therapy and retention.

Currently, we are implementing a cohort study to examine the effect of low birthweight and preterm birth on adherence to ART and retention in HIV care among postpartum women living with HIV in Ghana. The project is being funded by the National Institutes of Health, USA.