A Study of Information Needs and Information Behaviors of the Primary Caregivers of Children and Adolescents with Rare Diseases
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 disable...
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: | |
Online Access: | https://jlis.lis.ntu.edu.tw/files/journal/j43-5.pdf |
Similar Items
-
The information needs and seeking behaviour of orphans and vulnerable children and their caregivers, and the role of service providers in Namibia
by: Mnubi–Mchombu, Chiku
Published: (2013) -
Needs and skills of informal caregivers to care for a dependent person: a cross-sectional study
by: Maria dos Anjos Coelho Rodrigues Dixe, et al.
Published: (2019-09-01) -
Characteristics of the Informal Caregiver: An Integrative Literature Review
by: Bryant, Jonanna R.
Published: (2016) -
A qualitative exploration of the unmet information needs of Chinese advanced cancer patients and their informal caregivers
by: Tao Wang, et al.
Published: (2021-06-01) -
Information needs and information seeking behaviour of people with dementia and their non-professional caregivers: a scoping review
by: Aijia Soong, et al.
Published: (2020-02-01)