Transition from hospital to home care for preterm babies: A qualitative study of the experiences of caregivers in Uganda

Improving care for preterm babies could significantly increase child survival in low-and middle income countries. However, attention has mainly focused on facility-based care with little emphasis on transition from hospital to home after discharge. Our aim was to understand the experiences of the transition process among caregivers of preterm infants in Uganda in order to improve support systems. A qualitative study among caregivers of preterm infants in Iganga and Jinja districts in eastern Uganda was conducted in June 2019 through February 2020, involving seven focus group discussions and five in-depth interviews. We used thematic-content analysis to identify emergent themes related to the transition process. We included 56 caregivers, mainly mothers and fathers, from a range of socio-demographic backgrounds. Four themes emerged: caregivers’ experiences through the transition process from preparation in the hospital to providing care at home; appropriate communication; unmet information needs; and managing community expectations and perceptions. In addition, caregivers’ views on ‘peer-support’ was explored. Caregivers’ experiences, and their confidence and ability to provide care were related to preparation in the hospital after birth and until discharge, the information they received and the manner in which healthcare providers communicated. Healthcare workers were a trusted source of information while in the hospital, but there was no continuity of care after discharge which increased their fears and worries about the survival of their infant. They often felt confused, anxious and discouraged by the negative perceptions and expectations from the community. Fathers felt left-out as there was very little communication between them and the healthcare providers. Peer-support could enable a smooth transition from hospital to home care. Interventions to advance preterm care beyond the health facility through a well-supported transition from facility to home care are urgently required to improve health and survival of preterm infants in Uganda and other similar settings.