Exploring the potential for using parent experiences of pre-term birth to improve care in LMICs, using video narratives and digital stories.

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Providing people-centred care is now recognised as a fundamental pillar of high-quality healthcare, and part of the WHO's global health strategy. Empowering and engaging the people at the heart of health systems has the express aim of influencing the ways health services are delivered to individuals, families and communities, enabling health system co-production. Health systems in many countries in sub-Saharan Africa, including Kenya, are frequently characterised as 'weak', lacking human and financial resources and suffering from inadequate management and accountability mechanisms. Taking a people-centred approach is now a central tenet of health systems research and policy that seeks to understand, strengthen and improve these systems. Understanding patient experiences of health systems was identified as a key research priority by the Lancet Global Health Commission's 2018 report, "High-quality health systems in the Sustainable Development Goals era". This pilot project is a collaboration between centres of excellence from Kenya (health systems research) and the UK (patients' narratives and applied health research). In high income countries, studies of patients' narratives have been used highly effectively to inform policy and improve services, providing direct patient benefit. To date these approaches have not been applied in low and middle-income countries (LMICs). This project will address the need for people-centred care through a pilot, based on rigorous social science research, that uses mothers' experiences of preterm birth as a pathfinder to explore the potential for using patient experiences to improve care in LMIC settings. The research will explore the experiences of mothers of premature babies in Kenya, and use those experiences in the co-production of people-centred training resources for the multi-professional teams providing newborn care.Premature birth remains a global health priority and a perfect target for our health experience sharing project. In 2013 2.8 million deaths in neonates occurred in LMICs across the world. Improving access and the quality of care for premature babies is central to improving outcomes. In Kenya, 120 in every 1000 babies are born prematurely, nearly 200,000 babies each year. Prior work by this team, in Kenyan capital, Nairobi, estimated the potential burden of illness in this population, identified available care, how mothers access that care, and the quality of existing nursing services. Half of the babies born early or underweight do not access appropriate care. The ratio of nurses to babies is extremely low. While our work reveals mothers are important members of the care team, we know little about their experiences and perspectives in Nairobi or elsewhere in Kenya. Capturing the experiences of mothers of preterm babies is the next step towards improving care for this highly vulnerable population. This project will build on a recently completed longitudinal qualitative study of mother's experience of pre-term birth in two Nairobi hospitals. We will collect additional interviews, to broaden the sample, (audio or video recorded depending on preferences and consent) with mothers of premature babies in two settings (urban and rural). We will analyse these narratives to develop visual resources (video narratives and/or digital stories) and use these in the co-production of training resources for staff. We will work throughout the project with local, regional and national stakeholders to ensure our work can influence policy and change in the health system. We will evaluate the training to understand the impact of patient narratives on staff to produce empathetic and patient and family-centred care, and explore the potential for scale up. Our collaboration will build research capacity in Kenya, allow for mutual learning and, we hope, foster the development of regional health systems research networks that can support the development of people-centred health systems.