Adolescents' experiences and views of the national school-based thalassaemia screening programme in Malaysia: a qualitative study.

IF 1.5 Q4 GENETICS & HEREDITY

Journal of Community Genetics Pub Date : 2023-08-01 DOI:10.1007/s12687-023-00656-w

Huey Yee Tan, Norita Hussein, Yew Kong Lee, Tun Firzara Abdul Malik

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引用次数: 0

Abstract

In 2016, a national school-based thalassemia screening programme was implemented in Malaysia. This study aimed to explore the experiences and views of adolescents from an urban school who had undergone the screening programme. We carried out in-depth interviews with 18 participants aged between 18 and 19 years old, with 12 of them identified as carriers during the school screening. Interviews were transcribed verbatim and analysed using thematic analysis. Three main themes emerged from this study: (1) issues encountered at various levels of the school screening programme: appropriate age for screening, thalassaemia education in school, parental consent and follow-up visit and post-test counselling; (2) experiencing emotional rollercoaster: worry, anxiety, shame, stigma; (3) choosing future partners after carrier status was known-prepared or unprepared? Various issues and screening-related challenges were encountered before, during and after the screening test. Recommendations include improving thalassaemia screening education for both school-going adolescents and parents, and better follow-up care and support for those identified as carriers. These will help stakeholders to be well informed and supportive of thalassaemia screening in schools.

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马来西亚国家学校地中海贫血筛查计划的青少年经验和观点:一项定性研究。

2016年，马来西亚实施了一项以学校为基础的国家地中海贫血筛查规划。本研究旨在探讨一所城市学校接受筛检计划的青少年的经验和看法。我们对18名年龄在18 - 19岁的参与者进行了深度访谈，其中12人在学校筛查时被确定为携带者。访谈内容逐字记录，并采用专题分析进行分析。本研究提出了三个主要主题:(1)在学校筛查计划的各个层面遇到的问题:筛查的适当年龄、学校的地中海贫血教育、家长同意以及随访和测试后咨询;(2)经历情绪过山车:担心、焦虑、羞耻、污名化;(3)在知道承运人身份后选择未来的合作伙伴——准备好了还是没有准备好?在筛选测试之前、期间和之后都遇到了各种问题和与筛选相关的挑战。建议包括改善对学龄青少年和家长的地中海贫血筛查教育，以及对被确定为携带者的人提供更好的后续护理和支持。这将有助于利益攸关方充分了解并支持在学校进行地中海贫血筛查。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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来源期刊

Journal of Community Genetics GENETICS & HEREDITY-

CiteScore

3.30

自引率

5.30%

发文量

期刊介绍： The Journal of Community Genetics is an international forum for research in the ever-expanding field of community genetics, the art and science of applying medical genetics to human communities for the benefit of their individuals. Community genetics comprises all activities which identify persons at increased genetic risk and has an interest in assessing this risk, in order to enable those at risk to make informed decisions. Community genetics services thus encompass such activities as genetic screening, registration of genetic conditions in the population, routine preconceptional and prenatal genetic consultations, public education on genetic issues, and public debate on related ethical issues. The Journal of Community Genetics has a multidisciplinary scope. It covers medical genetics, epidemiology, genetics in primary care, public health aspects of genetics, and ethical, legal, social and economic issues. Its intention is to serve as a forum for community genetics worldwide, with a focus on low- and middle-income countries. The journal features original research papers, reviews, short communications, program reports, news, and correspondence. Program reports describe illustrative projects in the field of community genetics, e.g., design and progress of an educational program or the protocol and achievement of a gene bank. Case reports describing individual patients are not accepted.