Enablers and barriers to newborn screening for sickle cell disease in Africa: results from a qualitative study involving programmes in six countries.

Enablers and barriers to newborn screening for sickle cell disease in Africa: results from a qualitative study involving programmes in six countries.
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DOI:
10.1136/bmjopen-2021-057623
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发表时间:
2022-03-09
期刊:
影响因子:
2.9
通讯作者:
Ohene-Frempong K
Ohene-Frempong K
中科院分区:
医学3区
文献类型:
--
作者:
Archer NM;Inusa B;Makani J;Nkya S;Tshilolo L;Tubman VN;McGann PT;Ambrose EE;Henrich N;Spector J;Ohene-Frempong K

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鉴于新生儿血斑筛查(NBS)对镰状细胞病(SCD)患者的及时诊断和最佳临床管理的基本作用,我们试图使用既定的定性研究方法,系统地评估NBS在非洲实施SCD方案的推动因素和障碍。来自东非、西非和南部非洲六个国家的分娩中心和国家统计局实验室。8名方案负责人,参与在安哥拉、刚果民主共和国、加纳、利比里亚、尼日利亚和坦桑尼亚为可持续发展建立和运作国家统计局方案。使用归纳和演绎代码相结合的方法分析了通过结构化、分阶段访谈方法获得的数据,并将其用于确定与可持续发展国家统计局方案的执行和可持续性有关的主要主题。分析中提出了四个主要主题,涉及治理(例如,部署过度投入的临床工作人员执行国家业务时的务实考虑)、技术(例如,业务流程的设计和执行)、文化(例如,知识的多样性和社区工作人员的看法)和财务方面(例如,当外部资金可能有效地排除政府投入时可能出现的问题)。关键的经验教训包括有助于国家统计局方案长期可持续性的可感知因素。建立持久的国家统计局方案是改善慢性阻塞性肺病患者健康状况的行之有效的办法。在非洲组织这样的项目是可行的,但初步实施并不能保证可持续性。我们的分析表明,未来的方案应优先考虑政府合作伙伴的参与,并在方案开发的最早阶段提供资金。
Given the fundamental role of newborn bloodspot screening (NBS) to enable prompt diagnosis and optimal clinical management of individuals with sickle cell disease (SCD), we sought to systematically assess enablers and barriers to implementation of NBS programmes for SCD in Africa using established qualitative research methods. Childbirth centres and NBS laboratories from six countries in East, West and Southern Africa. Eight programme leaders involved with establishing and operating NBS programmes for SCD in Angola, Democratic Republic of Congo, Ghana, Liberia, Nigeria and Tanzania. Data obtained through a structured, phased interview approach were analysed using a combination of inductive and deductive codes and used to determine primary themes related to the implementation and sustainability of SCD NBS programmes. Four primary themes emerged from the analysis relating to governance (eg, pragmatic considerations when deploying overcommitted clinical staff to perform NBS), technical (eg, design and execution of operational processes), cultural (eg, variability of knowledge and perceptions of community-based staff) and financial (eg, issues that can arise when external funding may effectively preclude government inputs) aspects. Key learnings included perceived factors that contribute to long-term NBS programme sustainability. The establishment of enduring NBS programmes is a proven approach to improving the health of populations with SCD. Organising such programmes in Africa is feasible, but initial implementation does not assure sustainability. Our analysis suggests that future programmes should prioritise government partner participation and funding from the earliest stages of programme development.
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