'Only parents can understand the problems and needs of children with thalassaemia’: Parental activism for thalassaemia care in Northern India

Maya Unnithan, Chhaya Pachauli Pachauli, Sangeeta Chattoo, Karl Michael Atkin

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Evolving knowledge of genetics and improved clinical care have re-shaped life choices for those suffering from chronic, incurable conditions and their families. Yet the realisation of care requires complex navigation to access vital therapies which is often difficult for individuals or their family carers. In the paper we explore the struggles and strategies of parents of children with thalassemia (a genetically inherited blood disorder) in a North Indian city, who have come together to ensure better long-term health of their children. A focus on the ways in which families come together and remain apart in their quest for guaranteed access to life-saving substances such as filtered blood, provides insight into the diversity of bio-social strategies at work. It is not only family relationships and kinship, we suggest, but bio-sociality itself which is reshaped with the advent of new rights-based languages, evolving therapies and state support which hold out new possibilities for young people with thalassemia to live as normal a life-course as possible.
Original languageEnglish
Number of pages24
JournalAnthropology & Medicine
Early online date23 Feb 2023
Publication statusE-pub ahead of print - 23 Feb 2023

Bibliographical note

© 2023 The Author(s). Published by Informa
UK Limited, trading as Taylor & Francis


  • Thalassemia, kinship, blood, parental activism, India

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