Birth Defects in India

This book presents the epidemiology of birth defects and their public health and social implications in India. As neglected childhood disorders, birth defects remain invisible in global maternal and child health dialogues. Birth defects services are emerging in India. This book approaches birth defects from a public health perspective, identifying the core functions of a birth defects service. Keeping in mind the complex task of providing multidisciplinary services for children with disabilities and complex medical conditions, the book examines the basic public health activities that have been put in place to address these conditions in India. The book describes birth defects surveillance and the challenges of acquiring accurate and timely data on birth defects against the background of India's mixed health system. It discusses opportunities for prevention of birth defects and describes the structure and function of an emergent genetic service. It explores issuesrelated to an integrated service for children with special healthcare needs, such as screening, early intervention, and rehabilitation. Furthermore, it describes the impact of these conditions on caregivers, including birth defects stigma. This book not only addresses a knowledge gap in the field of public health in India, but also explores the broader issues of services for children with disabilities and disabling conditions in low and low-middle income settings where access to health care is not universal. Given the depth and breadth of its coverage, the book offers an essential resource for birth defects researchers, researchers in the field of maternal and child health, public health/ global health, disability researchers, and researchers from the fields of rehabilitation sciences, nursing and anthropology. This book will be a valuable read for social medicine/community medicine departments, global health courses, and public health schools inIndia and other low middle-income countries.

Remains relevant for both India and other resource-constrained, low, and middle income countries Discusses birth defects from a public health/health service approach Is highly informative for both new and more experienced health workers and researchers in the field

Auteur

Prof. Anita Kar is the former Director of the School of Health Sciences of Savitribai Phule Pune University (University of Pune), India, and the Founder-Director of the Birth Defects and Childhood Disability Research Centre, Pune. This research NGO is working on identifying contextually appropriate policies and services for congenital disorders and childhood disability in India, as well as advocating for including these conditions in the global maternal and child health dialogue. Dr Kar has a background in human genetics, public health and epidemiology. Her work in the field of birth defects has spanned over two decades and focuses specifically on examining how lack of services affect children, caregivers and families, and asking how birth defects services can be introduced in the resource-constrained health systems of low middle-income countries like India. She was responsible for establishing one of the first University Grants Commission approved Master of Public Health programs in the country.

Contenu
Birth Defects : a Public Health Approach.- Some common birth defects.- Thalidomide : Understanding the responsibilities of a birth defects service.- Birth defects surveillance in India .- Rare Disease registries: A case study of the haemophilia registry in India.- Magnitude of congenital anomalies in India.- Magnitude of developmental disabilities in India.- Magnitude and characteristics of children with congenital disabilities in India.- Preventing congenital anomalies through existing maternal and child health services in India.- Neural tube defects and folate status in India.- Haemoglobinopathies : Genetic services in India.- Medical, rehabilitation and social welfare services for children with birth defects and developmental disabilities in India.- Early Childhood Intervention Services in India.- Birth defects stigma.- Parenting a child with a disability: A review of caregivers' needsin India and service implications.- Quality of life and psychosocial needs of caregivers of children with birth defects: A case study of haemophilia.