Kharyal Rekha, Kumari Vanita, Mrunalini V T, Naik Monika, Joshi Poonam, Seth Tulika
Department of Hematology, All India Institute of Medical Sciences, New Delhi, 110029 India.
Delhi Cantt, New Delhi, India.
Indian J Hematol Blood Transfus. 2021 Apr;37(2):280-286. doi: 10.1007/s12288-020-01335-3. Epub 2020 Aug 19.
Thalassemia major can affect physical, psycho-social and economic life of patients and their parents. The aim of the study was to assess the disease knowledge and general self-efficacy among adolescents with Thalassemia major and their parents' perspective with a view to develop an informational booklet on thalassemia. In a cross-sectional study 50 adolescents along with 48 parents were recruited from the hematology day care centre of a tertiary care facility. Ethical clearance from institute ethics committee, written informed consent from parent and assent from the adolescent were taken. Consecutive participants those who consented were enrolled in the study. Adolescents between the age group of 10-18 years, and their parents completed the self-developed subject data sheet, knowledge questionnaire and standardized general self-efficacy tools. The mean knowledge scores of the adolescent and their parents related to thalassemia were 13.9 ± 2.9 and 13.7 ± 3.6 respectively, while the perceived GSE scores of the adolescent along with the parents' perspective were 30.1 ± 6.1 and 29.3 ± 6.5. Positive correlation between the adolescents' knowledge with GSE (r = 0.464, = 0.007) was observed. The knowledge of the adolescents and their parents showed significant association with the education ( = 0.001, = 0.002) residence ( = 0.04 and = 0.01) and parents' employment ( = 0.04). The knowledge of adolescents with thalassemia and their parents is limited. There is need to counsel the adolescents and their parents about the disease and its management in order to improve the GSE of these adolescents.
重型地中海贫血会影响患者及其父母的身体、心理社会和经济生活。本研究的目的是评估重型地中海贫血青少年的疾病知识和一般自我效能感以及他们父母的看法，以便编写一本关于地中海贫血的信息手册。在一项横断面研究中，从一家三级医疗机构的血液科日间护理中心招募了50名青少年和48名家长。获得了机构伦理委员会的伦理批准、家长的书面知情同意书以及青少年的同意。连续同意参与的参与者被纳入研究。年龄在10至18岁之间的青少年及其父母完成了自行编制的主题数据表、知识问卷和标准化的一般自我效能工具。青少年及其父母与地中海贫血相关的平均知识得分分别为13.9±2.9和13.7±3.6，而青少年的感知一般自我效能感得分以及父母的看法分别为30.1±6.1和29.3±6.5。观察到青少年的知识与一般自我效能感之间存在正相关（r = 0.464，P = 0.007）。青少年及其父母的知识与教育程度（P = 0.001，P = 0.002）、居住地（P = 0.04和P = 0.01）以及父母的就业情况（P = 0.04）存在显著关联。重型地中海贫血青少年及其父母的知识有限。需要就该疾病及其管理向青少年及其父母提供咨询，以提高这些青少年的一般自我效能感。
