罕见疾病儿童和青少年之主要照护者资讯需求和资讯行为研究.PDF

1422016.12 127-153 doi:10.6182/jlis.2016.14(2).127 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 1 2 1 2 Hui-Yu Fan , Ming-Hsin Phoebe Chiu 摘　要 10 Abstract 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