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

Abstract

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.

Coping Behaviors in Parents of Children with Thalassemia major

“…In the study of Yazdi et al (2007), receiving social support (2017) also revealed the lack of supportive network as one of the important factors of the increase in caring load and lack of suitable coping with the disease of children affected by thalassemia major (26). All these findings demonstrate the poor relationships between the parents and treatment team, including the doctors and nurses, for obtaining information, required support, and enhancing the abilities for taking care of children.…”

“…Parents of the children with thalassemia major encounter various issues with taking care of their children. In order to provide the child and parents with proper cares, it is necessary to understand these problems (25,26).…”

Experience of Parents Caring for Their Children with Thalassemia: Challenges and Issues for Integrative Review

“…17 "Lack of supportive behaviors in health care personnel and lack of holistic care for supporting the families might reflect many obstacles that required effective ways to cope with many challenges [sic] issue." 8 Absence of financial support: parents worried about lack of financial support because of the characteristics of thalassemia that require continuous long-term treatment throughout their children's lives. This means, parents need to spend a lot of money to cover the cost of transportation when visiting hospital for follow-ups or for blood transfusions, the cost of special food requirements and relaxation activities to decrease tension and anxiety of children.…”

“…This was due to limitations around language, lack of health insurance etc. Furthermore, to some context in Iran, 8 parents reported their stigma and social death from the inaccurate beliefs about the cause of chronic inherited illnesses like thalassemia. False beliefs held by people in society led to parents being seen as disgusting and being excluded from society.…”

“…For the most part, financial burden was acknowledged to be one of the challenges parents faced due to exorbitant treatment expenses and other expenses incurred from caring for their child (such as traveling to hospital, and parents' daily expenses for taking care of their child during hospitalization etc). [7][8][9][10] This demonstrates that there is a need for health care providers to understand parents' experiences as there might be both similarities and differences in points of concern and vulnerable issues in each area.…”