Rethinking neonatal post-discharge care: Learning from family and healthcare workers experiences of preterm care in Kenya.

Preterm births are a widely recognised global health concern, and continuity of care for preterm newborns is crucial. A growing number of studies have explored caregiver experiences of in-hospital care of preterm babies in high-income settings, but few have focused on low- and middle-income countries. Fewer still have examined families' lived experiences after discharge from hospital. This is an important research gap. Advancements in medical technologies have improved survival rates for preterm babies, but pre-term babies still face layered biomedical and social vulnerabilities with the potential for long-term development challenges, necessitating repeated follow-up and enhanced family support. In this fellowship, I will build on my in-depth, embedded ethnographic hospital-based work with families of pre-term babies in Kenya to focus on families’ experiences post-discharge, incorporating health workers’ perspectives. Using a qualitative and participatory approach, I will apply transitions theory to explore the stresses and challenges faced by families and healthcare workers, and their vulnerabilities, agency, and coping. Regional studies and my past research suggest that key concerns will be gaps in continuity of care, and family (and especially mother) stigma and social exclusion. Understanding these experiences of care is crucial in the re-design of a holistic, comprehensive people-centred post-discharge care system.