信息的力量与应对白化病：一项民族志研究

IF 1 Q3 INFORMATION SCIENCE & LIBRARY SCIENCE

IFLA JOURNAL-INTERNATIONAL FEDERATION OF LIBRARY ASSOCIATIONS Pub Date : 2022-07-15 DOI:10.1177/03400352221103892

Anna Ngula

{"title":"信息的力量与应对白化病：一项民族志研究","authors":"Anna Ngula","doi":"10.1177/03400352221103892","DOIUrl":null,"url":null,"abstract":"This article aims to ascertain the purposes for which the author needed information when her children with albinism were born, as well as explore the mechanisms she used to find information and the challenges she experienced when searching for information. An autoethnography method is used to share her lived experience of albinism, and the data has been collected through the author’s personal memory by recalling events that happened when she gave birth to her daughter in 2013 and her son in 2016. Information played a crucial role in helping the author to understand albinism better and to deal with her predicament. As a librarian and the mother of children with albinism, the author explored different mechanisms to find information. The Internet was the main source of information, as well as organisations such as Support in Namibia of Albinism Sufferers Requiring Assistance and the Namibia Albino Association Trust, which deal with the plight of people with albinism in the country.","PeriodicalId":45334,"journal":{"name":"IFLA JOURNAL-INTERNATIONAL FEDERATION OF LIBRARY ASSOCIATIONS","volume":null,"pages":null},"PeriodicalIF":1.0000,"publicationDate":"2022-07-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":"{\"title\":\"The power of information and coping with albinism: An autoethnographic study\",\"authors\":\"Anna Ngula\",\"doi\":\"10.1177/03400352221103892\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"This article aims to ascertain the purposes for which the author needed information when her children with albinism were born, as well as explore the mechanisms she used to find information and the challenges she experienced when searching for information. An autoethnography method is used to share her lived experience of albinism, and the data has been collected through the author’s personal memory by recalling events that happened when she gave birth to her daughter in 2013 and her son in 2016. Information played a crucial role in helping the author to understand albinism better and to deal with her predicament. As a librarian and the mother of children with albinism, the author explored different mechanisms to find information. The Internet was the main source of information, as well as organisations such as Support in Namibia of Albinism Sufferers Requiring Assistance and the Namibia Albino Association Trust, which deal with the plight of people with albinism in the country.\",\"PeriodicalId\":45334,\"journal\":{\"name\":\"IFLA JOURNAL-INTERNATIONAL FEDERATION OF LIBRARY ASSOCIATIONS\",\"volume\":null,\"pages\":null},\"PeriodicalIF\":1.0000,\"publicationDate\":\"2022-07-15\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"IFLA JOURNAL-INTERNATIONAL FEDERATION OF LIBRARY ASSOCIATIONS\",\"FirstCategoryId\":\"1085\",\"ListUrlMain\":\"https://doi.org/10.1177/03400352221103892\",\"RegionNum\":0,\"RegionCategory\":null,\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q3\",\"JCRName\":\"INFORMATION SCIENCE & LIBRARY SCIENCE\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"IFLA JOURNAL-INTERNATIONAL FEDERATION OF LIBRARY ASSOCIATIONS","FirstCategoryId":"1085","ListUrlMain":"https://doi.org/10.1177/03400352221103892","RegionNum":0,"RegionCategory":null,"ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q3","JCRName":"INFORMATION SCIENCE & LIBRARY SCIENCE","Score":null,"Total":0}

引用次数: 0

摘要

本文旨在确定作者在患有白化病的孩子出生时需要信息的目的，并探讨她用来寻找信息的机制以及她在寻找信息时遇到的挑战。使用民族志方法来分享她白化病的生活经历，这些数据是通过作者的个人记忆收集的，通过回忆她2013年生下女儿和2016年生下儿子时发生的事件。信息在帮助作者更好地理解白化病和处理她的困境方面发挥了至关重要的作用。作为一名图书管理员和白化病儿童的母亲，作者探索了寻找信息的不同机制。互联网是信息的主要来源，还有一些组织，如支持纳米比亚需要援助的白化病患者和纳米比亚白化病协会信托基金，这些组织处理该国白化病病人的困境。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

查看原文本刊更多论文

The power of information and coping with albinism: An autoethnographic study

This article aims to ascertain the purposes for which the author needed information when her children with albinism were born, as well as explore the mechanisms she used to find information and the challenges she experienced when searching for information. An autoethnography method is used to share her lived experience of albinism, and the data has been collected through the author’s personal memory by recalling events that happened when she gave birth to her daughter in 2013 and her son in 2016. Information played a crucial role in helping the author to understand albinism better and to deal with her predicament. As a librarian and the mother of children with albinism, the author explored different mechanisms to find information. The Internet was the main source of information, as well as organisations such as Support in Namibia of Albinism Sufferers Requiring Assistance and the Namibia Albino Association Trust, which deal with the plight of people with albinism in the country.

求助全文

通过发布文献求助，成功后即可免费获取论文全文。去求助

来源期刊

IFLA JOURNAL-INTERNATIONAL FEDERATION OF LIBRARY ASSOCIATIONS INFORMATION SCIENCE & LIBRARY SCIENCE-

CiteScore

2.70

自引率

15.40%

发文量

期刊介绍： IFLA Journal is an international journal which publishes original peer reviewed articles, a selection of peer reviewed IFLA conference papers, and news of current IFLA activities. Content is selected to reflect the variety of the international information profession, ranging from freedom of access to information, knowledge management, services to the visually impaired and intellectual property. The IFLA Journal aims to promote and support the aims and core values of IFLA as the global voice of the library and information profession by providing authoritative coverage and analysis of the activities of IFLA and its various constituent bodies and members, and those of other bodies with similar aims and interests.