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  • 學位論文

自閉症兒童主要照顧者之資訊行為:以資訊世界圖研究法為取徑

Exploring the Information Behavior of Primary Caregivers for Children with Autism Spectrum Disorder: An Information World Mapping Approach

指導教授 : 蔡天怡

摘要


本研究旨在了解自閉症兒童主要照顧者因照顧自閉症者而產生的資訊需求及其資訊世界中人、物、地之關係與重要性,尤其是資訊世界中的資訊分享行為,研究問題包括:(一)自閉症兒童主要照顧者的資訊世界包含哪些資訊需求?(二)自閉症兒童主要照顧者的資訊尋求歷程中包含哪些人、物、地點?這些人、物、地點之間的關係與重要性為何?又如何協助其滿足不同類型的資訊需求?(三)自閉症兒童主要照顧者之資訊世界圖包含哪些資訊分享行為?其中,哪些人、物和地點較易促成資訊的分享? 本研究透過自閉症相關機構、研究者自身人脈及受訪者相互介紹,招募到17位6至12歲自閉症兒童的主要照顧者,以資訊世界圖研究法,與其進行半結構式深度訪談。經類屬分析與情境分析,本研究發現,自閉症兒童主要照顧者以自閉症兒童為中心,展開多樣的資訊需求。其中,以醫學診斷、治療及諮商資訊需求為大宗,其次為親職教養資訊需求,再次為教育資訊需求,其他則有心理支持、經濟補助、法律、就業等生活資訊需求。照顧者會依前述資訊需求情境,透過不同的人、物和地點之間轉介,獲取所需的資訊。尤其在兒童確診後,其資訊需求更益多元,所需之資訊來源管道愈趨專業。此外,在擁有充足自信且處於穩定狀態之後,照顧者方有餘力與他人分享資訊。而療育場所、定期性課程和自宅等照顧者長期居住或定期拜訪的場域,為較易發生單向或雙向資訊分享的地點。 根據前述研究發現,本研究分別針對圖書資訊單位、醫療單位、教育單位及社會福利單位提出實務建議。圖書資訊單位方面,建議針對館員進行身心障礙讀者服務教育訓練,增進館員對此議題之認識,並與醫療、特教組織結盟,建立穩定的夥伴關係,以利整合外部單位的資訊與活動,從自閉症兒童主要照顧者的日常照顧情境中切入,提供適切的資訊服務;醫療單位方面,建議加強自閉症衛教資訊的宣導,增進新生兒父母對幼兒發展與特殊疾病的了解。此外,強化醫療診斷人士對外部單位資訊的認識,以便適時地將照顧者轉介給其他專業組織,節省照顧者自行摸索與搜尋相關資訊的時間;教育單位方面,建議提升特教資源的透明度,定期整理並將特教學習資源或課程公告於校園公布欄與網站;社會福利單位方面,建議擴大與外部組織的合作,主動將機構資訊提供給圖書館、醫療院所等外部單位,提升自閉症兒童主要照顧者獲取資訊的效率以及照顧知識技能。

並列摘要


This study aims to explore the information needs of primary caregivers of children with autism spectrum disorder (ASD) when caring for the autistic children, and to identify the relationships among people, items, and places in the information world, especially the information sharing behavior. The research questions include: (1) What information needs are presented through the information world maps of the primary caregivers of children with autism spectrum disorder? (2) What people, items, and places are included in the information seeking process of the primary caregivers of children with autism spectrum disorder? What are the relationships among these people, items, and places? How do the above people, items and places help meet their various information needs? (3) How do primary caregivers of autistic children present their information sharing behavior through their information world maps? What people, items, and places facilitate information sharing? Semi-structured in-depth interviews were conducted with the information world mapping visual-elicitation method. The research participants were recruited using purposive sampling and snowball sampling through autism-related institutions, the researcher's personal connections, and participants. Seventeen primary caregivers of children with autism between 6 and 12 years old were interviewed. The current study found that the information needs of the primary caregivers of children with autism centered on their children. Among which, diagnosis, treatment, and counseling information are primary information needs, followed by parental education, school resources, and after-school learning information needs. Financial aids, law, employment, and other information needs were also mentioned. Caregivers tend to obtain information through referrals from and among different people, items and places according to different information needs. After the children were diagnosed, caregivers’ information needs became more diverse, and the information sources they need became more professional. As to information sharing, caregivers would only have time to share information with others when having sufficient self-confidence and being in a stable state. And one-way or two-way information sharing is more likely to occur somewhere caregivers stay for a long time, such as their own home, or visit regularly for treatment or regular courses. Based on the findings of the current study, practical suggestions for library and information institutions, medical institutions, education institutions and social welfare institutions are provided. As to libraries, librarians should be provided with training for physically and mentally handicapped readers to increase their awareness of relevant issues. Libraries may also collaborate with medical and special education organizations, and establish close and stable partnerships with other institutions that provide ASD information and activities. Through integrating the above information, libraries may be able to provide pertinent information services that better fit into caregivers’ real-life daily care situations. As to medical centers, promoting health education and patient education would help increase awareness of ASD among parents so that they may get a basic understanding regarding children development and special diseases, and thus help early diagnosis. Medical centers should also better prepare medical professionals, especially those who help diagnose ASD, with external resources on ASD so that caregivers can be referred to appropriate professional organizations in a timely manner without being overwhelmed by fragmented information. As to education institutions, increasing transparency of special education resources is important. Schools can organize and announce special education learning resources or courses on campus bulletin boards and websites. As to social welfare institutions, proactively providing information to caregivers through popular caregiver communities and professional lectures, and expanding inter-organizational collaboration with libraries, medical institutions and other institutions may help primary caregivers of children with autism obtain information more effectively.

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