Information seeking by parents of children with physical disabilities: An exploratory qualitative study. (January 2017)

• Record Type: Journal Article
• Authors: Alsem, M.W.; Ausems, F.; Verhoef, M.; Jongmans, M.J.; Meily-Visser, J.M.A.; Ketelaar, M.
• Is Part Of: Research in developmental disabilities. Volume 60(2017:Jan.)
• Page Start: 125
• Page End: 134
• Publication Date: 2017-01
• Subjects: Information seeking -- Experience-based information -- Parents -- Disabilities -- Internet; Developmental disabilities -- Periodicals; Developmentally disabled -- Research -- United States -- Periodicals; Developmentally disabled children -- Education -- Research -- United States -- Periodicals; Developmental Disabilities -- Periodicals; Disabled -- Periodicals; Mental Retardation -- rehabilitation -- Periodicals; Personnes atteintes de troubles du développement -- Recherche -- États-Unis -- Périodiques; Enfants atteints de troubles du développement -- Éducation -- Recherche -- États-Unis -- Périodiques; Développement, Troubles du -- Recherche -- États-Unis -- Périodiques; 616.858800
• DOI: 10.1016/j.ridd.2016.11.015
• Languages: English
• ISSNs: 0891-4222

Abstract

Highlights: Parents of children with disabilities have many questions on different topics. Information needs vary between parents and are constantly changing. Experience-based knowledge is important for parents. Information from the Internet is rarely discussed with professionals. Abstract: 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.