M W Alsem1, F Ausems1, M Verhoef1, M J Jongmans2, J M A Meily-Visser1, M Ketelaar3. 1. Center of Excellence for Rehabilitation Medicine, Brain Center Rudolf Magnus, University Medical Center Utrecht and De Hoogstraat Rehabilitation, Utrecht, the Netherlands. 2. Department of Child, Family & Education Studies, Faculty of Social and Behavioural Sciences, Utrecht University, The Netherlands. 3. Center of Excellence for Rehabilitation Medicine, Brain Center Rudolf Magnus, University Medical Center Utrecht and De Hoogstraat Rehabilitation, Utrecht, the Netherlands. Electronic address: m.ketelaar@dehoogstraat.nl.
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.
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.
Authors: María Inmaculada Fernández-Ávalos; María Nieves Pérez-Marfil; Rosario Ferrer-Cascales; Francisco Cruz-Quintana; Violeta Clement-Carbonell; Manuel Fernández-Alcántara Journal: Int J Environ Res Public Health Date: 2020-11-23 Impact factor: 3.390
Authors: Linda Nguyen; Hanae Davis; Samantha Bellefeuille; Jessica Havens; Susan M Jack; Briano Di Rezze; Marjolijn Ketelaar; Jan Willem Gorter Journal: Front Rehabil Sci Date: 2021-10-05
Authors: Niels Kramer; Sanne L Nijhof; Elise M van de Putte; Marjolijn Ketelaar; Martha A Grootenhuis; Kors van der Ent; Joost F Swart; Martine van Grotel; Geertje W Dalmeijer; Merel M Nap-van der Vlist Journal: BMJ Paediatr Open Date: 2021-05-21