{"title":"遗传疾病:发展中国家通过移动电话平台进行白化病咨询","authors":"A. Coleman","doi":"10.31901/24566772.2018/12.04.569","DOIUrl":null,"url":null,"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.","PeriodicalId":39279,"journal":{"name":"Studies on Ethno-Medicine","volume":" ","pages":""},"PeriodicalIF":0.0000,"publicationDate":"2018-10-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"2","resultStr":"{\"title\":\"Genetic Disorder: Albinism Counselling Through a Mobile Phone Platform in Developing Countries\",\"authors\":\"A. Coleman\",\"doi\":\"10.31901/24566772.2018/12.04.569\",\"DOIUrl\":null,\"url\":null,\"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.\",\"PeriodicalId\":39279,\"journal\":{\"name\":\"Studies on Ethno-Medicine\",\"volume\":\" \",\"pages\":\"\"},\"PeriodicalIF\":0.0000,\"publicationDate\":\"2018-10-09\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"\",\"citationCount\":\"2\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Studies on Ethno-Medicine\",\"FirstCategoryId\":\"1085\",\"ListUrlMain\":\"https://doi.org/10.31901/24566772.2018/12.04.569\",\"RegionNum\":0,\"RegionCategory\":null,\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q2\",\"JCRName\":\"Social Sciences\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Studies on Ethno-Medicine","FirstCategoryId":"1085","ListUrlMain":"https://doi.org/10.31901/24566772.2018/12.04.569","RegionNum":0,"RegionCategory":null,"ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q2","JCRName":"Social Sciences","Score":null,"Total":0}
Genetic Disorder: Albinism Counselling Through a Mobile Phone Platform in Developing Countries
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.
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).