Co-creation of a digital tool for the empowerment of parents of children with physical disabilities

被引：11
作者：
Alsem M.W. [1 ,2 ]
van Meeteren K.M. [1 ]
Verhoef M. [1 ]
Schmitz M.J.W.M. [3 ]
Jongmans M.J. [4 ,5 ]
Meily-Visser J.M.A. [1 ]
Ketelaar M. [1 ]
机构：
[1] Center of Excellence for Rehabilitation Medicine, Brain Center Rudolf Magnus, University Medical Center Utrecht and De Hoogstraat Rehabilitation, Rembrandtkade 10, Utrecht
[2] Department of Rehabilitation Medicine, Academic Medical Centre, Amsterdam
[3] Zuyd University of Applied Science, Research Centre for Data Intelligence, ICT Faculty, Heerlen
[4] Department of Child, Family & Education Studies, Faculty of Social and Behavioural Sciences, Utrecht University, Utrecht
[5] Department of Neonatology, Wilhelmina Children’s hospital, University Medical Center Utrecht, Utrecht
来源：
Research Involvement and Engagement | / 3卷 / 1期
关键词：
Co-creation; Empowerment; Health literacy; Information; Internet; Parents;
D O I：
10.1186/s40900-017-0079-6
中图分类号：
学科分类号：
摘要：
Background Parents of children with physical disabilities do much to support their child in daily life. In doing so, they are faced with many challenges. These parents have a wide range of unmet needs, especially for information, on various topics. Getting timely and reliable information is very difficult for parents, whereas being informed is a major requirement for the process of empowerment and shared decision-making. This paper describes the development of a digital tool to support parents in this process. During its development, working together with parents was crucial to address relevant topics and design a user-centred intervention. Methods In co-creation with parents, healthcare professionals, IT-professionals and researchers, a digital tool was developed, the ‘WWW-roadmap’ [‘WWW-wijzer’ in Dutch]. This digital tool aims to enable parents to explore their questions (What do I want to know?), help in their search for information (Where can I find the information I need), and refer to appropriate professionals (Who can assist me further?). During the process, we got extensive feedback from a parent panel consisting of parents of children with physical disabilities, enabling us to create the tool ‘with’ rather than ‘for’ them. This led to a user-friendly and problem-driven tool. Discussion The WWW-roadmap can function as a tool to help parents formulate their questions, search for information and thus prepare for consultations with healthcare professionals, and to facilitate parental empowerment and shared-decision making by parent and professional. Effects of using the WWW-roadmap on consultations with professionals will be studied in the future. © The Author(s). 2017.
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