ArticleResearch involvement and engagement2017
Co-creation of a digital tool for the empowerment of parents of children with physical disabilities.
Article in Research involvement and engagement, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 9 papers.
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Who cites it
9 citing papers in PubMed.
- Exploring the lived experiences of mothers of disabled children with profound and multiple intellectual disabilities in Saudi Arabia: understanding caregiver empowerment.Frontiers in psychology · 2026Article
- Development of an Online Training Course for Government Employees to Support Families With a Child With Profound Intellectual and Multiple Disabilities.Journal of applied research in intellectual disabilities : JARID · 2025Article
- Family-centred care interventions for children with chronic conditions: A scoping review.Health expectations : an international journal of public participation in health care and health policy · 2024Article
- Building a Life Course Intervention Research Framework.Pediatrics · 2022Article
- Effectiveness of a peer group-based online intervention program in empowering families of children with disabilities at home.Frontiers in pediatrics · 2022Article
- Describing the Process and Tools Adopted to Cocreate a Smartphone App for Obesity Prevention in Childhood: Mixed Method Study.JMIR mHealth and uHealth · 2020Article
- Designing a tool to support patient and public involvement in research projects: the Involvement Matrix.Research involvement and engagement · 2020Article
- Parental empowerment in paediatric rehabilitation: Exploring the role of a digital tool to help parents prepare for consultation with a physician.Child: care, health and development · 2019Article
- Using Co-Design to Develop a Collective Leadership Intervention for Healthcare Teams to Improve Safety Culture.International journal of environmental research and public health · 2018Article
Corrections and comments
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Authors and funding
7 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
plain english summaryParents of children with physical disabilities do a lot to support their child in daily life. In doing this they are faced with many challenges. These parents have a wide range of unmet needs, especially for information, on different topics. It is sometimes hard for them to get the right information at the right moment, and to ask the right questions to physicians and other healthcare professionals. In order to develop a digital tool to help parents formulate questions and find information, we thought it would be crucial to work together in a process of co-creation with parents, researchers, IT-specialists and healthcare professionals. In close collaboration with them we developed a tool that aims to help parents ask questions, find information and take a more leading role in consultations with healthcare professionals, called the WWW-roadmap (WWW-wijzer in Dutch).In two groups of parents (one group with and one group without experience of using the tool), we will study the effects of using this tool, on consultations with physicians. We expect that using the tool will result in better empowerment, satisfaction and family-centred care. ABSTRACT:
backgroundParents 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.
methodsIn 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.
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