A Study of Information Needs and Information Behaviors of the Primary Caregivers of Children and Adolescents with Rare Diseases

• Main Authors: Hui-Yu Fan, Ming-Hsin Phoebe Chiu
• Format: Article
• Language: English
• Published: National Taiwan University 2016-12-01
• Series: Journal of Library and Information Studies
• Subjects: rare diseases; children and adolescents; primary caregivers; information needs; information behaviors
• Online Access: https://jlis.lis.ntu.edu.tw/files/journal/j43-5.pdf

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 semistructured 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 patientsupport 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. (Article content in Chinese with English extended abstract)