"We give our all": Mothers’ experience of participating in the care of their newborns in newborn care units in Eastern Uganda

Abstract Introduction: Mothers’ participation in the care of their sick newborns in newborn care units (NCUs) has been linked to several advantages including earlier discharge, fewer complications, better mother-baby bonding, and an easier transition after discharge. This study aimed to understand mothers' experiences while participating in the care of their sick newborns in the NCUs to inform interventions promoting mothers’ participation in resource-limited settings. Methods: We conducted an exploratory qualitative study comprised of 18 in-depth interviews with mothers caring for their newborns in two NCUs at a regional referral and general hospital in Eastern Uganda between April and May 2022. The interviews were audio-recorded and then transcribed. For analysis, we used a thematic approach. Results: Mothers participated in activities ranging from the more basic, like breastfeeding and skin-to-skin care, to the more “clinical”, including tasks such as nasal gastric feeding, and oxygen therapy provision. Mothers were eager to participate in care. The fear of losing their baby was a major underlying sentiment driving their participation. Mothers' perspectives on i) medical care, ii) the living space in the NCU, and iii) their support system emerged as key themes. Mothers expressed varying degrees of confidence in care, depending on whether or not their baby was improving. Although some mothers needed medical attention, NCU staff only paid attention to the baby. NCU space was crowded, and mothers expressed a lack of control over their personal space. Mothers turned to families to mobilize resources because caring for babies was logistically and financially taxing. Family member support roles and expectation were gendered. Conclusion: This study indicates that mothers are eager to participate in their babies' care in the NCU. Many negative experiences, however, taint mothers' participation in their babies' care. Interventions to encourage mothers' participation in the NICU should focus on improving NCU staff-mother interaction, privacy, and space issues, and leveraging the family's role in supporting mothers.