Coping with Genetic Disorder: A Sociological Understanding of Parent-Caregivers' Experiences

Abstract

Parent-caregivers (PACs) of Thalassaemic children face a variety of stress and strain. The article looks into the different experiences of PACs in a relatively underdeveloped setting in India characterized by poor medical and social support services. The problem is compounded by illiteracy and poverty of the PACs. The study highlights the different ways in which PACs cope with the existential crisis of illness in their lives. Central to coping, meanings play an important role. Hoping and normalization are other mechanisms which help them to confront the crisis. The findings indicate considerable differences in caregiving experiences according to PACs' education and religious background. These differences are also reflected in their awareness and preferences for different intervention programmes. The article concludes by indicating the need to develop culturally sensitive intervention strategies which can take into account these variations.

Keywords

caregiving experiences meanings hope intervention strategies

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