关于卡拉布拉吉政府地区医院重型地中海贫血症患儿家长对地中海贫血症的认识的研究

Sharanabasappa S Dhanwadkar, Ashwini G. Rayee, Sandeep H, Ashwini Kumari N B
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摘要

背景:地中海贫血症是世界性的公共卫生问题。由于地中海贫血的疾病负担沉重、社会经济条件低下以及预防策略不完善,我们的患者除了反复输血外别无选择。因此,预防是减轻该疾病负担的唯一手段。本研究旨在找出地中海贫血患儿家长在对β地中海贫血的认识、态度和实践(KAP)方面存在的差距。这将有助于在不久的将来减轻该疾病给社会带来的负担。调查目的评估重型地中海贫血患儿家长对重型地中海贫血症的认识(K)、态度(A)和做法(P)。材料和方法:对所有符合纳入标准的家长进行了半结构化的预验证问卷调查,旨在评估与重型地中海贫血症有关的知识、态度和做法。对收集到的数据进行了分析。结果在这项研究中,没有一位参与者在第一个孩子出生前对地中海贫血症有所了解。在这项研究中,76.9% 的研究对象知道并了解地中海贫血症的遗传性质。在我们的研究中,约 75.4% 的参与者不知道婚前筛查,50.8% 的参与者不知道产前诊断。其中约 18.5%的人正在进行绒毛取样测试。只有 60.0%的地中海贫血患儿的其他兄弟姐妹接受了地中海贫血筛查。只有 43.1%的人接受过有关重型地中海贫血的遗传咨询。结论从我们的研究中可以看出,家长对地中海贫血症缺乏足够的认识、积极的态度和实践。每个地中海贫血症日间护理中心都需要对家长和护理人员进行健康教育和定期咨询,以预防地中海贫血症。
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A study on awareness among parents with beta thalassemia major children in government district hospital, Kalaburagi
Background: Thalassemia is a public health problem worldwide. With the high disease burden of thalassemia, low socioeconomic conditions and poor preventive strategies, our patients are left with no other option except the repeated blood transfusion. So prevention is the only tool to reduce the burden of this disease. This study was done to identify the gap in knowledge, attitude and practices (KAP) about β-thalassemia among the parents of beta thalassemia children. So that it will be helpful to reduce the burden of the disease in the society in the near future. Objectives: To assess the Knowledge (K), attitude (A) and practices (P) among parents with beta thalassemia major children regarding beta thalassemia major disease. Materials and Methods: A semi structured pre-validated questionnaire designed to assess the Knowledge, Attitudes and Practices in relation to beta thalassemia major disease was administered to all the parents fulfilling the inclusion criteria. Collected data was analysed. Results: In this study, None of the participants had knowledge about thalassemia before their first child was born. In this study, 76.9% study subjects knew and understood the genetic nature of Thalassemia. In our study, about 75.4% participants didn’t know about premarital screening and 50.8% didn’t know about prenatal diagnosis. About 18.5% of them are practising chorionic villous sampling test. Only 60.0% of them got other siblings of the thalassemia children screened for thalassemia. Only 43.1% received genetic counselling about thalassemia major. Conclusion: It was seen from our study that parents don’t have adequate knowledge, positive attitude and practice on thalassemia major. Health education and periodic counselling of parents and care takers about prevention of thalassemia needs to be implemented at every thalassemia day care centre.
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