Birth Defects in India: Epidemiology and Public Health Implications

ISBN-13: 9789811615535 / Angielski / Twarda / 2021 / 362 str.

Anita Kar

Spis treści

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’ needs in India and service implications

Quality of life and psychosocial needs of caregivers of children with birth defects: A case study of haemophilia

O autorze

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.

Blurb

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 issues related 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 in India and other low middle-income countries.