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Experiences of a feasibility study of children with albinism in Zimbabwe: A discussion paper.

机译:津巴布韦白化病儿童可行性研究的经验:讨论文件。

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BACKGROUND: Feasibility studies are often a helpful prelude to constructing fundable research proposals. Where the intended research is in a foreign country, focuses on a vulnerable population, and is aggravated by political and pragmatic challenges, feasibility studies become essential. Albinism, a genetic condition of reduced melanin synthesis, is a major public health issue in southern Africa. Whilst much is known about the health needs of children with albinism, little is understood about how to address these effectively in low income countries. Further, the child care and protection needs of children with albinism are largely unexplored. Zimbabwe's current political and economic climate presents additional challenges to research on the topic. METHOD: The technical, economic, legal, collaborative, operational, schedule and political feasibilities (acronym TELCOSP) to undertaking a study on children with albinism in Zimbabwe were explored over a six week period of fieldwork in the country. RESULTS: Using the TELSCOSP framework allowed a deconstruction of each challenge to provide innovative solutions. The economic and legal feasibility aspects presented some difficulties that will require flexibility and perseverance to overcome. CONCLUSION: With the assistance of the local communities and people with albinism in Zimbabwe, the obstacles appear surmountable. The feasibility study provided a productive framework for addressing potential challenges in studying the needs of Zimbabwe's children living with albinism.
机译:背景:可行性研究通常是构建可资助研究方案的有用前奏。如果预期的研究在国外,针对弱势群体,并且由于政治和务实的挑战而加剧,那么可行性研究就变得至关重要。白化病是黑色素合成减少的遗传条件,是南部非洲的主要公共卫生问题。尽管对白化病儿童的健康需求知之甚少,但如何在低收入国家有效解决这些问题却知之甚少。此外,白化病儿童的育儿和保护需求在很大程度上尚未得到开发。津巴布韦当前的政治和经济环境为该主题研究提出了更多挑战。方法:在津巴布韦进行了为期六周的实地调查,探讨了在津巴布韦开展白化病儿童研究的技术,经济,法律,合作,运作,进度和政治可行性(简称TELCOSP)。结果:使用TELSCOSP框架可以解构每个挑战,以提供创新的解决方案。经济和法律可行性方面存在一些困难,需要灵活和毅力来克服。结论:在津巴布韦当地社区和白化病患者的帮助下,障碍似乎可以克服。可行性研究为解决津巴布韦白化病儿童的需求研究中的潜在挑战提供了一个富有成效的框架。

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