Genetic Disorder: Albinism Counselling Through a Mobile Phone Platform in Developing Countries

Q2 Social Sciences Studies on Ethno-Medicine Pub Date : 2018-10-09 DOI:10.31901/24566772.2018/12.04.569
A. Coleman
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引用次数: 2

Abstract

A congenital disorder (albinism) is characterized by a complete or partial absence of pigment in the skin, hair and eyes without effective counselling and education to the patients in Africa is of great concern. This paper investigated how people living with albinism are counseled and educated in South Africa. The study employed a case study approach in data collection. It was revealed that the number of trained genetic nurse counsellors in South Africa are few and this makes it extremely difficult for the counsellors to offer counselling support to albinos. Majority of the albinos travel long distances to city clinics for help. It was further discovered that almost ninety percent of both the counsellors and albinos own mobile or smart phones which can be used as a communication tool to counsel the albinos. However, this is not the case. The findings lead to the proposal of Genetic disorder counselling mobile phone platform – (GDCMPP) to enhance interaction between albinos and genetic nurse to improve education, and counselling services to the albinos.
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遗传疾病:发展中国家通过移动电话平台进行白化病咨询
一种先天性疾病(白化病)的特点是皮肤、头发和眼睛中完全或部分缺乏色素,而对非洲患者没有进行有效的咨询和教育,这是非常令人关切的问题。本文调查了南非的白化病患者是如何接受咨询和教育的。本研究采用个案研究法收集资料。据透露,南非训练有素的遗传护士咨询师数量很少,这使得咨询师极难向白化病患者提供咨询支持。大多数白化病人长途跋涉到城市诊所寻求帮助。研究还发现,几乎90%的咨询师和白化病患者都拥有移动电话或智能手机,可以作为向白化病患者提供咨询的沟通工具。然而,事实并非如此。研究结果建议建立遗传疾病咨询手机平台(GDCMPP),以加强白化患者与遗传护士之间的互动,改善对白化患者的教育和咨询服务。
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来源期刊
Studies on Ethno-Medicine
Studies on Ethno-Medicine Social Sciences-Cultural Studies
CiteScore
0.50
自引率
0.00%
发文量
13
期刊介绍: Studies on Ethno-Medicine is a peer reviewed, internationally circulated journal. It publishes reports of original research, theoretical articles, timely reviews, brief communications, book reviews and other publications in the interdisciplinary field of ethno-medicine. The journal serves as a forum for physical, social and life scientists as well as for health professionals. The transdisciplinary areas covered by this journal include, but are not limited to, Physical Sciences, Anthropology, Sociology, Geography, Life Sciences, Environmental Sciences, Botany, Agriculture, Home Science, Zoology, Genetics, Biology, Medical Sciences, Public Health, Demography and Epidemiology. The journal publishes basic, applied and methodologically oriented research from all such areas. The journal is committed to prompt review, and priority publication is given to manuscripts with novel or timely findings, and to manuscript of unusual interest. Further, the manuscripts are categorised under three types, namely - Regular articles, Short Communications and Reviews. The researchers are invited to submit original papers in English (papers published elsewhere or under consideration elsewhere shall not be considered).
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