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題 名 | 罕見疾病兒童與青少年之主要照護者資訊需求與資訊行為研究=A Study of Information Needs and Information Behaviors of the Primary Caregivers of Children and Adolescents with Rare Diseases |
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作 者 | 范卉妤; 邱銘心; | 書刊名 | 圖書資訊學刊 |
卷 期 | 14:2 2016.12[民105.12] |
頁 次 | 頁127-153 |
分類號 | 028.6 |
關鍵詞 | 罕見疾病; 兒童與青少年; 主要照護者; 資訊需求; 資訊行為; Rare diseases; Children and adolescents; Primary caregivers; Information needs; Information behaviors; |
語 文 | 中文(Chinese) |
英文摘要 | Rare diseases by definition do not occur often and it is difficult to provide palliative care for those affected due to the lack of information and treatment for those rare diseases. The families of those with rare diseases bear a heavy burden and have a harder time than even the families of disabled people. This research's goal is to provide the families of those with rare diseases with information on how to provide care for their family members. The study uses the qualitative research method of semi-structured interview. We interviewed 10 rare disease children and adolescents' primary caregivers. The results of the study indicated that if no one suffers from the rare diseases in their family, primary caregivers are not aware of the rare disease information. After their initial diagnosis, the caregivers will want to know how to best care for their family member, from how best to provide supportive care to providing physical therapy, in order to improve their quality of life and prognosis. When they discover their child's disease is incurable, primary caregivers need information about social welfare and their child's future. The main source of medical care information is provided by hospitals and patient-support organizations. Regarding information behavior, primary caregivers employ the information which they obtain and they either check the information they obtain with a professional authority, multiple sources, or compare it with patient experience to validate if the information is accurate or not. Finally, primary caregivers are glad to share what they find with other families that have children with a rare disease. They may use different ways of sharing information such as the Internet or face to face. |
本系統中英文摘要資訊取自各篇刊載內容。