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Empowering Parents of Children with Thalassemia


Affiliations
1 College of Nursing, Saifai, Etawah (U.P.), India
2 M.M. College of Nursing, Mullana, Ambala, India
     

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Thalassemia is a common disorder worldwide with a predominant incidence in Mediterranean countries, North Africa, Middle East, India, Central Asia, and Southeast Asia. Approximately, 240 million people are estimated as carriers for β-thalessemia worldwide while 100,000 thalassemic major are born annually2. It is not only affect the children but also their parents due to the cost of treatment involving regular blood transfusions, iron chelation, frequent hospitalization and general medical follow up. Diagnosis of the disease and adjusting with it for parents is considered as a crisis and they react differently. Most of the parents can successfully adopt themselves with chronic disease of their children. In contrast, some of them also may not be successful in coping with it due to lack of access to accurate information about the disease, lack of appropriate support resources, high treatment costs, mental status and social damages. Nurses have a key role in empowerment of parents of children with thalassemia for the child's development needs such as health, social identity, education, self care skills, family and social relationships, emotional and behavioural development; the parents' own capacity to parent, including issues related to guidance and boundaries; and to deal with the family and environmental factors like family history and functioning, employment, income, family's social integration and community resources.

Keywords

Thalassemia , Blood Transfusion, Iron Chelation, Empowerment
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  • Empowering Parents of Children with Thalassemia

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Authors

Jyoti Bala
College of Nursing, Saifai, Etawah (U.P.), India
Jyoti Sarin
M.M. College of Nursing, Mullana, Ambala, India

Abstract


Thalassemia is a common disorder worldwide with a predominant incidence in Mediterranean countries, North Africa, Middle East, India, Central Asia, and Southeast Asia. Approximately, 240 million people are estimated as carriers for β-thalessemia worldwide while 100,000 thalassemic major are born annually2. It is not only affect the children but also their parents due to the cost of treatment involving regular blood transfusions, iron chelation, frequent hospitalization and general medical follow up. Diagnosis of the disease and adjusting with it for parents is considered as a crisis and they react differently. Most of the parents can successfully adopt themselves with chronic disease of their children. In contrast, some of them also may not be successful in coping with it due to lack of access to accurate information about the disease, lack of appropriate support resources, high treatment costs, mental status and social damages. Nurses have a key role in empowerment of parents of children with thalassemia for the child's development needs such as health, social identity, education, self care skills, family and social relationships, emotional and behavioural development; the parents' own capacity to parent, including issues related to guidance and boundaries; and to deal with the family and environmental factors like family history and functioning, employment, income, family's social integration and community resources.

Keywords


Thalassemia , Blood Transfusion, Iron Chelation, Empowerment