"What are you carrying?" Experiences of mothers with preterm babies in low-resource setting neonatal intensive care unit: a qualitative study

Introduction Babies born preterm often have challenges in feeding, temperature control and breathing difficulty and are prone to infection during the neonatal period. These usually necessitate admission to the neonatal intensive care unit (NICU). Admission to NICU disrupts the mother-baby bonding. Objective This study explored the lived experiences of mothers with preterm babies admitted to NICU in a low-resource setting. Study design This was a qualitative study where 16 participants took part in indepth interviews and 35 in focus group discussions. We included mothers who delivered and were caring for preterm babies at the NICU of Mulago National Referral Hospital. Study setting Data were collected from a public hospital, which works as a district and national referral hospital located in the capital of Uganda. Participants Fifty-one mothers with preterm babies in the NICU were sampled and recruited after informed consent. Data were analysed using manual thematic analysis. Results There were six themes on the experiences of mothers of preterm babies in NICU: constant worry and uncertainty about the survival of their babies, baby feeding challenges, worries of discharge, communication gaps between mothers and nurses, community acceptability and disdain for preterm babies, and financial challenges. Conclusions and recommendations Mothers of preterm babies admitted to NICU in a low-resource setting still need a lot of support other than the medical care given to their babies. Support groups in the hospital and community are recommended to help in dealing with these challenges.