RECOGNITION AND CARE SEEKING BEHAVIOR FOR NEWBORN AND MATERNAL COMPLICATIONS AND FACILITY READINESS TO PROVIDE QUALITY ANTENATAL, INTRAPARTUM AND POSTPARTUM CARE IN RURAL NEPAL by Tsering Pema Lama A dissertation submitted to Johns Hopkins University in conformity with the requirements for the degree of Doctor of Philosophy. Baltimore, Maryland August, 2017 © Tsering P. Lama 2017 All rights reserved Abstract Background Globally between 1990 and 2015, maternal and newborn mortality have decreased 44% and 46% respectively. Achievement of the Sustainable Development Goal targets, however, will require accelerated progress to ending preventable maternal and newborn deaths. This requires a renewed focus on maternal and newborn care at the facility level and by trained health workers. In settings such as rural Nepal where the majority of the births still occur at home, there are still knowledge gaps on reasons for low usage of maternal and newborn care at health facilities despite safe motherhood programs and community based newborn care services. Objective This dissertation aims to describe the facility readiness in providing quality maternal and newborn care services, to assess how women and caretakers identify maternal/newborn complications, and to characterize the decision making process and patterns of care seeking. We also explored if place of birth was associated with the type of postnatal care sought for severely ill newborns. Methods Primary data on facility readiness and health worker knowledge to provide maternal and newborn care was collected through a health facility audit and health worker interviews at 23 birthing centers and one district hospital in Sarlahi district. A qualitative study included 32 illness event narratives (6 maternal/newborn deaths each and 10 maternal/newborn illnesses each) collected through small group interviews and in-depth interviews on illness recognition, ii decision-making process and the care-seeking steps along with timeline of events from illness recognition to illness resolution or death. Bivariate and multivariate multinomial logistic regression was used to analyze the association between place of birth and type of postnatal care sought among a subset of severely ill newborns from a population based sample of newborns. Results Readiness of facilities to provide basic emergency obstetric and newborn care services was poor among the primary health care center level birthing centers. Infection prevention was lacking in quarter of health facilities and shortage of essential medicines was a major barrier to facility readiness. Only half of the health workers had received the government-mandated additional training in skilled birth attendance and the private sector staff scored significantly lower on knowledge of essential maternal health issues. Delay in perceiving the severity of illness, and initial care-seeking from informal health providers (traditional healers for mostly maternal cases; village doctors for both) delayed prompt care-seeking at health facility. Some barriers to seeking care at a health facility included transport problems, lack of money, illness onset at night, low perceived severity and distance to facility. Informal care and no care was sought for 44% and 20% of severely ill newborns. Caregivers of severely ill newborns born in a health facility were twice as likely to seek formal care as opposed to no care compared to non-facility born newborns [adjusted relative risk ratio (RRR): 2.00; 95% CI: 1.30-3.06]. Conclusion These findings have important implications for safe motherhood programs, newborn care programs and quality of care improvements in health facilities. We suggest addressing the gaps in facility readiness through routine monitoring and supervision, improving supply chains, creating an enabling environment for health workers, and extending refresher trainings to all iii health workers. Our findings show the need to utilize informal care providers as links to the formal providers by training them in danger sign identification and referrals to health facility. We also suggest improving counseling on recognition of danger signs and prompt care seeking through community level interventions so as to reach a wider audience. The supply and demand for delivery at health facilities needs to increase and postnatal home-visits of home births by female community health volunteers could increase care seeking from formal providers. iv Dissertation Committee of Readers PhD Advisor: Dr. Luke C. Mullany, Professor Department of International Health Dissertation Readers: Dr. Joanne Katz, Professor Department of International Health Dr. David Celentano, Professor Department of Epidemiology Dr. Azadeh Farzin, Assistant Professor School of Medicine v Acknowledgements I would first like to acknowledge the Nepalese women and their families and the health workers of Sarlahi district who participated in this research. Without their participation, this research wouldn’t have been possible. I would like to also thank my advisor, Dr. Luke C. Mullany who has mentored me throughout my doctoral education process from proposal writing, field work, manuscript writing and the dissertation writing process. I have gotten the opportunity to learn a lot from him in the classroom as well as in the field setting which has allowed me to develop my skills and confidence to build a career in public health. I am honored to be his first Nepali doctoral student and thank him for his constant support and guidance through this journey. Luke was very patient with me especially when I was figuring out my dissertation research topic/questions and guided me in the right directions whenever I was struggling or in doubt. He allowed me the freedom to pursue my individual research interests, while ensuring that I received a solid foundation in maternal and newborn health, epidemiology and statistical methods. Dr. Joanne Katz has also been a mentor to me since my first year in the program and I am very grateful for her critical insight, feedback and revisions of my dissertation papers. Her relentless hard work, attention to detail and caring nature is what I admire most and am inspired by. I would also like to acknowledge Dr. Melinda Munos and Dr. Larissa Jennings who served as my dissertation committee members and provided feedback in the proposal writing and writing of the papers in this dissertation. Melinda guided me through the facility assessment and quality of care research and also provided valuable feedback on my papers. Larissa provided advice on the qualitative study methods and analysis as well as very helpful feedback on the qualitative research paper. I would also like to acknowledge my dissertation committee of readers, Dr. vi David Celentano, Dr. Azadeh Farzin, Dr. Agbessi Amouzou (alternate) and Dr. Stéphane Helleringer (alternate) for their time and review of my dissertation. To all the staff of Nepal Nutrition Intervention Project –Sarlahi (NNIPS) team in Sarlahi, I am forever thankful for their dedication, hard work and commitment in conducting community- based research in such challenging settings. Dr. Subarna Kumar Khatri and Steven C. LeClerq helped me in finalizing the research tools and forms, managing and supervising the field work, and supporting me during my field work in Sarlahi. I would like to thank Mrs. Shakuntala Singh for helping with the administrative work and translations of my research tools, consent forms and other documents from English to Nepali. I would like to thank the field coordinators of NNIPS field office Mr. Uma Shah and Mr. Shishir Shrestha in helping me with the development and finalization of the tools, training field staff, supervising the data collection, logistics of data collection, arranging meetings with the District Public Health Office and for answering all my queries. Furthermore, I am grateful to all the field supervisors and other senior staff for providing their inputs while developing the research tools, training and for their monitoring and supervision of the field work on a daily basis. I am also very thankful to the field teams who collected the data for the parent trial as well as other components of my study, and without whom this study would also not be possible. I would also like to thank the data entry team/supervisors along with the administration team for their contribution towards this study. The health facility assessment part of my research would not have been possible without the permission and support from the District Public Health Office and for that I am very grateful. I would like to especially thank Mrs. Laxmi Shrestha (Public Health Nurse Officer) who assisted me in the finalization of the health facility audit and health worker interview tools and also accompanied me during some of the facility assessments. She answered my numerous questions vii on the safe motherhood program in the district and also helped me understand the workings of the birthing centers in the district. My classmates and friends have been a source of comfort throughout graduate school. I am thankful for my friends in the PhD cohort who helped me during the first two years of course work and with whom I was able to share some of our life changing moment like weddings and baby showers. I am thankful to Naoko Kozuki who was one of the first friends I made in the cohort and our common interest in maternal and newborn health and research in Nepal brought us even closer. I am thankful to Aleks Mihailnovic, Abhimanyu Mahajan, Tanvir Hussain and Elie Al Kazzi,