Understanding resilience in chronically Ill children: Parental perspectives on strengths, difficulties and fostering resilience in children with thalassemia major

Pages: 588-593
Priyanka Padhy (Department of Elementary Education Lady Shri Ram College for Women, University of Delhi, Delhi and Centre for Early Childhood Development and Research Jamia Millia Islamia, New Delhi)
Nimisha Kumar (Centre for Early Childhood Development and Research Jamia Millia Islamia, New Delhi)

Children the world over face a multitude of challenges to their healthy development. But people working with children have consistently found evidence of life-affirming and adaptive tendencies that help children thrive despite exposure to adversity, also known as ‘resilience’. Social ecological approach to the study of resilience in chronically ill children allows an understanding of how the attributes of the self, the features of the family environment and characteristics of the wider social environment interact to enable chronically ill children to adapt positively despite potentially life-threatening conditions. This paper presents the findings of a pilot study exploring the perspectives of 6 parents of children with Thalassemia Major, undergoing treatment in a New Delhi Municipal Corporation hospital in South Delhi for the past 3 years. Thalassemia Major is a genetic blood disorder requiring long-term medical management and frequent hospitalisations. Employing the approach of ‘Interpretative phenomenological analysis’ (Smith, Harre, & Langenhove, 1995) parental perceptions were explored using semi-structured interviews to derive accounts of the strengths, difficulties, and ongoing challenges faced by the children and the families, as well as the kind of familial environment and community linkages that seem to support resilience in Thalassemic children.