Experience and Supporting Needs of Family with Children with Thalassemia β Mayor

  • Titi Sulastri Health Polytechnic Ministry of Healt Jakarta III
  • Djajadiman Gatot Faculty of Medicine, University of Indonesia
  • Yeni Rustina Rustina Faculty of Nursing Universitas Indonesia
  • Ede Surya Darmawan Public Health faculty, Universitas Indonesia
Keywords: Parent’s experience, School-age children, Thalassemia β mayor


Concept of Well-being and sick explained that human being is in health condition in one point and sick in another point. However, once people get sick, people will do any treatment, as visiting hospital, either inpatient or outpatient. Thalassemia is the most common hereditary blood disorder in thalassemia belt, which known as a malaria endemic area as well, include Indonesia.  One of the chronic illness impacts, including thalassemia, toward family is guilty feeling (children or parents) which affect to children lack of self-care, distressful, physical disorder, powerless, and helplessness. Parents of school-age children with thalassemia β mayor show varied respond toward this circumstance. This qualitative method research with phenomenology descriptive approach aims to explore parents’ experience on taking care of school-age children with thalassemia β mayor. By using descriptive phenomenology, the study observes every problem through place it on natural circumstance. Data were collected through in-depth interview. 5 participants were recruited purposively, included 4 mothers and 1 father, with range in age from 38 – 54, elementary to university educational background and come from Sunda, Java and Betawi tribe. The study identified 7 themes consists of 5 themes described parents’ experience on take care of children with thalassemia β mayor and 2 themes described family support needs on taking care their thalassemic children.


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How to Cite
Sulastri, T., Gatot, D., Rustina, Y., & Darmawan, E. (2018). Experience and Supporting Needs of Family with Children with Thalassemia β Mayor. Proceeding 1st. International Conference Health Polytechnic of Kupang, 169-183. Retrieved from https://proceeding.poltekeskupang.ac.id/index.php/ichpk/article/view/27