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

提供以人为本的医疗服务现已被公认为高质量医疗保健的基本支柱，也是世卫组织全球卫生战略的一部分。增强处于卫生系统核心地位的人的权能并使其参与，其明确目标是影响向个人、家庭和社区提供卫生服务的方式，使卫生系统能够共同生产。包括肯尼亚在内的撒哈拉以南非洲许多国家的卫生系统经常被描述为“薄弱”，缺乏人力和财政资源，管理和问责机制不足。采取以人为本的方法现在是卫生系统研究和政策的中心原则，旨在了解、加强和改善这些系统。《柳叶刀》全球卫生委员会2018年报告《可持续发展目标时代的高质量卫生系统》将了解患者对卫生系统的体验确定为一项关键的研究重点。这一试点项目是肯尼亚（卫生系统研究）和联合王国（病人叙述和应用卫生研究）的英才中心之间的合作。在高收入国家，对患者叙述的研究已被高度有效地用于为政策提供信息和改善服务，从而使患者直接受益。迄今为止，这些方法尚未在低收入和中等收入国家得到应用。该项目将在严格的社会科学研究的基础上，通过试点解决以人为本的护理需求，利用母亲的早产经验作为探索者，探索利用患者经验改善低收入国家护理的潜力。该研究将探讨肯尼亚早产儿母亲的经验，并将这些经验用于为提供新生儿护理的多专业团队共同制作以人为本的培训资源。早产仍然是全球卫生优先事项，也是我们卫生经验分享项目的完美目标。2013年，全世界中低收入国家有280万新生儿死亡。改善早产儿护理的可及性和质量是改善结果的核心。在肯尼亚，每1000个婴儿中有120个早产，每年有近20万婴儿。该小组先前在肯尼亚首都内罗毕开展的工作估计了这一人群的潜在疾病负担，确定了可用的护理，母亲如何获得护理以及现有护理服务的质量。一半早产或体重不足的婴儿得不到适当的照顾。护士与婴儿的比例非常低。虽然我们的工作揭示了母亲是护理团队的重要成员，但我们对她们在内罗毕或肯尼亚其他地方的经历和观点知之甚少。了解早产儿母亲的经历是改善这一高度脆弱人群护理的下一步。该项目将以最近完成的关于内罗毕两家医院母亲早产经历的纵向定性研究为基础。我们将收集更多的采访，以扩大样本，（音频或视频记录取决于偏好和同意）与早产儿的母亲在两个设置（城市和农村）。我们将分析这些叙述，以开发视觉资源（视频叙述和/或数字故事），并将其用于为工作人员共同制作培训资源。我们将在整个项目中与地方，区域和国家利益相关者合作，以确保我们的工作能够影响卫生系统的政策和变革。我们将评估培训，以了解患者叙述对工作人员的影响，以产生同情心和以患者和家庭为中心的护理，并探索扩大规模的潜力。我们的合作将建设肯尼亚的研究能力，促进相互学习，并希望促进区域卫生系统研究网络的发展，以支持发展以人为本的卫生系统。

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.