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

TY - JOUR

T1 - 'Only parents can understand the problems and needs of children with thalassaemia’: Parental activism for thalassaemia care in Northern India

AU - Maya Unnithan

AU - Pachauli, Chhaya Pachauli

AU - Chattoo, Sangeeta

AU - Atkin, Karl Michael

N1 - © 2023 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group

PY - 2023/2/23

Y1 - 2023/2/23

N2 - 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.

AB - 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.

KW - Thalassemia, kinship, blood, parental activism, India

U2 - https://doi.org/10.1080/13648470.2023.2180258

DO - https://doi.org/10.1080/13648470.2023.2180258

M3 - Article

SN - 1469-2910

JO - Anthropology & Medicine

JF - Anthropology & Medicine

ER -