Tan Huey Yee, Hussein Norita, Lee Yew Kong, Abdul Malik Tun Firzara
Tamparuli Health Clinic, Ministry of Health, Jalan Pekan Tamparuli, 89250, Tamparuli, Sabah, Malaysia.
Department of Primary Care Medicine, Faculty of Medicine, Universiti Malaya, 50603, Kuala Lumpur, Malaysia.
J Community Genet. 2023 Aug;14(4):361-369. doi: 10.1007/s12687-023-00656-w. Epub 2023 Jul 1.
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.
2016年，马来西亚实施了一项全国性的基于学校的地中海贫血筛查计划。本研究旨在探讨一所城市学校中接受过该筛查计划的青少年的经历和看法。我们对18名年龄在18至19岁之间的参与者进行了深入访谈，其中12人在学校筛查中被确定为携带者。访谈内容逐字转录，并采用主题分析法进行分析。本研究出现了三个主要主题：（1）学校筛查计划各层面遇到的问题：筛查的合适年龄、学校中的地中海贫血教育、家长同意及随访和检测后咨询；（2）经历情绪起伏：担忧、焦虑、羞耻、污名；（3）在知晓携带者身份后选择未来伴侣——有准备还是没准备？在筛查测试前、期间和之后遇到了各种问题及与筛查相关的挑战。建议包括改善对在校青少年和家长的地中海贫血筛查教育，以及为那些被确定为携带者的人提供更好的后续护理和支持。这些将有助于利益相关者充分了解并支持学校中的地中海贫血筛查。
