GAMBARAN BEBAN ORANG TUA SEBAGAI CAREGIVER PADA ANAK (6-12 TAHUN) DENGAN TALASEMIA MAYOR DI PERSATUAN ORANG TUA PENDERITA TALASEMIA INDONESIA (POPTI) SEMARANG

Thalassemia is a disease, caused by a decreasing of hemoglobin production. According to the Indonesia’s Ministry of Health in 2012 the carrier prevalence of thalassemia in Indonesia was 3-8% of the 240 million population. A number of patients reached 200 people in 2015 at Semarang. Patients with thalassemia might get too much iron through blood transfusions that can lead to complications. These conditions make them dependent on family, especially parent who acts as a caregiver. Caring on maximum and sustainable health care would impact to caregiver as physical, psychological, social and financial burdens. The objective of the study is to describe parent's burden as caregiver in child-age (6-12 years) with thalassemia major at Parent Association of Thalassemia Indonesia, Semarang including physical domain, psychological, social and financial. The research method was a survey descriptive method. The sampling technique used sampling total, a number of samples were 98 respondents. The result of the study are: 52 respondents (53.1%) did not experience with burdens, 40 respondents (40.8%) had light burden, 5 respondents (5.1%) had medium burdens, and 1 respondent (1.0%) had severed burdens. Mostly, the respondents had no experiences burden on physical domain, psychological, and social. On the other hand, there were 36,7% respondents had moderate financial burdens. Parent Support Group is one of way to do by POPTI to decrease parent’s burden