Strategies for enhancing quality of life in thalassemic children

Coping Strategy of Family in Treating Children with Thalassemia Mayor aged 6–12 Years in the Urban Area of Indonesia

“…The complications caused can affect the quality of life of patients and their parents in many aspects [10]. The factors that can affect the quality of life of thalassemia children are (1). physical factors such as family history, age at onset of anemia, supportive therapy, and maintaining levels of pretransfusion, (2).…”

“…social factors such as isolation and social conditions bad economy and (4). factors affecting school functioning include frequent absence from school and poor academic performance [1].…”

“…Illness can be obtained during life or be inherited. One of the inherited diseases is thalassemia [1]. Thalassemia refers to genetic disorders in the production of globin chains.…”

“…More than 200 mutations of thalassemia β, although most are rare, it is known that around 80% of thalassemia is worldwide. 5%-10% of the population carries the α genethalassemia [1]. Worldwide, around 15 million people are estimated to suffer from thalassemic disorders.…”

“…Thalassemia is a hereditary disease caused by failure to form one of the four amino acid chains that make up hemoglobin, so that hemoglobin is not fully formed. The body cannot form normal red blood cells, so red blood cells are easily damaged or short-lived for <120 days, and anemia develops [1]. Symptoms of thalassemia major usually include growth and delayed puberty, enlarged liver, spleen, pale, jaundice, disruption of the growth of the sex glands, leg pain, fracture of the forehead, cheeks, and prominent jawbone.…”