Journal des soins infirmiers et des soins

The Burden of Care: Experiences of Parents of Children with Thalassemia

Abstract

Batool Pouraboli, Heidar Ali Abedi*, Abbas Abbaszadeh and Majid Kazemi

Introduction: Parents who care for Thalassemia children tolerate a great burden. Understanding these sufferings seems necessary in order to provide appropriate care. This study was aimed to explore the experiences of parents who have children with thalassemia. Method: A qualitative approach was used to obtain rich data. Twenty-two parents were recruited purposefully from one charity clinic in South East of Iran. Semi-structured interviews were used. Data were analyzed by Lundman and Granheim's content analysis method. Results: Data analysis led to form one main theme including “Parents’ Burden of care”. Within this theme the following categories created: immersion in suffering, stigma and social death, uncertainty about future, and absence of a support network. Conclusion: The findings of this study showed that Caring for children with thalassemia have a significant impact on the lives of caregivers and alleviating caregivers’ burden is critical to managing parents. This research may be useful in terms of increasing information about thalassemia and raising consciousness of nurses and other health care providers.