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

罕見疾病為罹患人數極少之疾病，無解的病因讓照護者能收集到的醫護資訊有限，其承受之照護壓力高於一般身障家庭。本研究希望減少未來罕病家庭對資訊的不確定性，採半結構式訪談10位罕病兒童與青少年的主要照護者為研究對象。照護者在病友未發病前多不會注意罕病資訊，歷經診斷與確診後，則開始想了解罕病的資訊。治療與復健階段，照護者著手找尋減緩病情的治療方式，在確定病患必須終身與病為伍時，照護者會面臨社會福利及生涯發展的資訊需求。主要照護資訊來源多以醫院與病友協會為主。而照護者皆會進一步地使用所獲取之資訊，以醫療專業權威、多重資訊來源、自身經驗，擇其一作為辨識資訊正確性的方法。最後，照護者也樂於和他人分享資訊，然分享資訊的方式會因照護者平常使用網路的習慣而有所不同。

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.