Information seeking by parents of children with physical disabilities: An exploratory qualitative study

被引:57
作者
Alsem, M. W. [1 ,2 ]
Ausems, F. [1 ,2 ]
Verhoef, M. [1 ,2 ]
Jongmans, M. J. [3 ]
Meily-Visser, J. M. A. [1 ,2 ]
Ketelaar, M. [1 ,2 ]
机构
[1] Univ Med Ctr Utrecht, Ctr Excellence Rehabil Med, Brain Ctr Rudolf Magnus, Utrecht, Netherlands
[2] De Hoogstr Rehabil, Utrecht, Netherlands
[3] Univ Utrecht, Dept Child Family & Educ Studies, Fac Social & Behav Sci, NL-3508 TC Utrecht, Netherlands
关键词
Information seeking; Experience-based information; Parents; Disabilities; Internet; FAMILY-CENTERED CARE; HEALTH INFORMATION; CEREBRAL-PALSY; YOUNG-CHILDREN; SERVICE NEEDS; INTERNET; PARTICIPATION; EMPOWERMENT; EXPERIENCES; SUPPORT;
D O I
10.1016/j.ridd.2016.11.015
中图分类号
G76 [特殊教育];
学科分类号
040109 [特殊教育学];
摘要
Background: Evidence suggests that parents of children with disabilities feel that not all their information needs are being met, but it remains unclear how parents try to fill these information gaps. Aims: The aim of this study is to describe how parents of children with physical disabilities search for and evaluate information. Methods: Qualitative semi-structured interviews were conducted with 15 parents of children with a disability, aged 1.5-21 years. Data were analysed using thematic analysis. Results: There was much variation in information needs between parents. Parents used different sources, depending on the type of information needed, the most important being healthcare professionals, peers, and websites. Peers played an important role in information provision and were the preferred source of experience-based knowledge and support. The Internet is a widely used medium to search for information and to access various sources. There was a general preference for closed Internet communities for peer contact. Information was commonly evaluated by comparing sources. Conclusions and implications: Parents use different sources for different information needs, and evaluate information by comparing them. Healthcare professionals and parents can support each other in locating and evaluating information including experience-based knowledge. Healthcare professionals should guide parents in their search for information and experience -based knowledge from peers. (C) 2016 Elsevier Ltd. All rights reserved.
引用
收藏
页码:125 / 134
页数:10
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