Quality of Life and Psychosocial Needs of Caregivers of Children with Birth Defects: A Case Study of Haemophilia

Abstract

Disabling birth defects significantly impact the life of caregivers and siblings. The article uses haemophilia, a lifelong bleeding disorder, as a case study to illustrate the impact of a congenital disorder, with specific context to India, where, assured services for treatment are available in limitation. The article presents the results of a qualitative enquiry of mothers of children and young adults with haemophilia, in order to illustrate the impact of a chronic, heritable condition on caregivers. The article discusses that despite the different clinical types, the chal lenges encountered by caregivers are similar. As the psychosocial support improves the quality of life, this article contends that psychosocial interventions must be an integral component of a birth defects programme