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

Autor: Tan HY; Tamparuli Health Clinic, Ministry of Health, Jalan Pekan Tamparuli, 89250, Tamparuli, Sabah, Malaysia., Hussein N; Department of Primary Care Medicine, Faculty of Medicine, Universiti Malaya, 50603, Kuala Lumpur, Malaysia. nhrita@um.edu.my., Lee YK; Department of Primary Care Medicine, Faculty of Medicine, Universiti Malaya, 50603, Kuala Lumpur, Malaysia., Abdul Malik TF; Department of Primary Care Medicine, Faculty of Medicine, Universiti Malaya, 50603, Kuala Lumpur, Malaysia.
Jazyk: angličtina
Zdroj: Journal of community genetics [J Community Genet] 2023 Aug; Vol. 14 (4), pp. 361-369. Date of Electronic Publication: 2023 Jul 01.
DOI: 10.1007/s12687-023-00656-w
Abstrakt: 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.
(© 2023. The Author(s), under exclusive licence to Springer-Verlag GmbH Germany, part of Springer Nature.)
Databáze: MEDLINE
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