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

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.

This project aims to identify the issues that are important to mothers of a baby born prematurely in Kenya, and assess the feasibility of using these experiences in the co-production of people-centred staff training. The research will span the continuum of antenatal, peripartum and post discharge care.
We will identify a Stakeholder Group to guide the research, co-produce outputs and develop impact from the research in later workstreams. The group will be drawn initially from our existing networks to understand the key neonatal policy and implementation stakeholders at a national, county and hospital level. It will include healthcare staff, managers, policy makers and influencers, and crucially, mothers.
The project will use the following methods to address its objectives. Obj 1. (i) We will conduct a secondary analysis of qualitative data collected by co-PI Oluoch for her longitudinal study of mothers' experiences of pre-term birth in two Nairobi hospitals. (ii) In two settings (Nairobi and Kilifi counties), we will supplement this sample, conducting semi-structured narrative interviews to collect detailed narratives from mothers to understand women's experiences of pre-term birth and subsequent care of their baby. Thematic analysis will identify and compare the issues important to mothers. Obj. 2 We will use the Experience Based Co-design (EBCD) approach to identify key service delivery 'touchpoints', and develop a series of video narratives and digital stories. Obj. 3 We will use EBCD in workshops to develop staff training and pilot with staff and medical students Obj 4. This initial use of detailed personal narratives will be the subject to a formative evaluation, using self-reported questionnaires and interviews to begin to develop a more generalisable understanding of their potential use and value.

The research is intended to benefit one of the most vulnerable groups of users of health services in low and middle-income countries (LMICs): premature babies and their mothers. It will also benefit staff who care for these babies in a particularly under-resourced, over-burdened section of the health system. We will develop and pilot training that uses the experiences of mothers of premature babies, bringing their perspectives to the explicit consciousness of policymakers, influencers, managers and trainees; and evaluate the potential for using these perspectives in the co-design of services to improve patient-centred care.

While considerable progress has been made in reducing the global burden of child mortality in LMICs, neonatal survival remains challenging. In East Africa small for gestational age or pre-term birth contributes to 52% of neonatal deaths with prematurity posing the greatest risk. Our recent work found 25% of Nairobi births are premature, where just four public healthcare facilities care for over 70% of the babies who access care. Recently completed work by team members (HSRI MR/M015386/1) revealed that these facilities suffer very low nurse to patient ratios. Nurses work long hours with little support, impacting on their ability and willingness to spend time with mothers of premature babies. Embedded qualitative work with nurses characterised their work in major public health facilities as 'impossible'. Linked preliminary work interviewing mothers of these premature babies suggests they find these overstretched facilities disorientating and receive little, if any, professional support. These are initial insights into the realities of preterm care that remain opaque, hidden to most health system planners, policy makers, influencers, and health professionals. Related studies in hospitals on the Kenyan coast suggest similar challenges in a very different rural context.

Ongoing work involving team members now seeks to test ways to improve hospital care for sick babies in Kenya through providing training and support aimed at improving team work. As yet, this work does not include insights from mothers' experiences. What is needed is a mechanism to share these insights. The proposed pilot will examine and shine a light on these everyday realities in Kenya, drawing on the voices of mothers to contribute to developing more responsive health service delivery strategies.

MOTHERS Many of the mothers we will interview have very little 'voice' in society and the difficulties they face, the strategies they develop, in finding care are largely ignored.
STAFF While many difficulties the system faces are budget and material constraints, past research suggests the quality of interactions with patients can be improved through a process of sharing patient experiences, and generating cost-free changes like demonstrating kindness and empathy, improved communication and reconnection with values of care.
SYSTEM The proposed work will test the potential for building a foundation for stronger, more people-oriented services and impact on crucial health system "software". Strengthened health systems are essential to meet the needs of families of premature babies. As part of the national Kenyan Medical Research Institute (KEMRI), we are well positioned to provide direct advice and guidance to the MoH.
LITERATURE We can make a substantial contribution to literature on: pre-term care; health systems; patient experience; health-seeking behaviour, and experience-based co-design (see Academic Beneficiaries)