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Child Care Health Dev. 2019 Sep;45(5):623-636. doi: 10.1111/cch.12700. Epub 2019 Jul 16.

Parental empowerment in paediatric rehabilitation: Exploring the role of a digital tool to help parents prepare for consultation with a physician.

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Center of Excellence for Rehabilitation Medicine, Brain Center Rudolf Magnus, University Medical Center Utrecht and De Hoogstraat Rehabilitation, Utrecht University, Utrecht, The Netherlands.
Department of Rehabilitation Medicine, Amsterdam University Medical Centers, location AMC, Meibergdreef 9, Amsterdam, The Netherlands.
Department of Rehabilitation, Physical Therapy Science and Sports, Brain Center Rudolf Magnus, University Medical Center Utrecht, Utrecht University, Utrecht, The Netherlands.
Department of Education and Pedagogy, Faculty of Social and Behavioural Sciences, Utrecht University, the Netherlands and Department of Neonatology, Wilhelmina Children's hospital, University Medical Center Utrecht, Utrecht, The Netherlands.
BOSK Association of persons with congenital physical handicaps, Utrecht, The Netherlands.
Department of Paediatric Rehabilitation, Rehabilitation Center Merem, Huizen, The Netherlands.
Department of Paediatric Rehabilitation, Rijndam Rehabilitation, Rotterdam, The Netherlands.
Research Center Autonomy and Participation, Faculty of Health, Zuyd University of Applied Science, Heerlen, The Netherlands.



To explore experiences of parents of children with disabilities using the WWW, roadmap, a tool to support them in exploring needs, finding information, and asking questions of professionals and to explore differences between parents who had used the WWW-roadmap to prepare for consultation with their rehabilitation physician and parents who had not.


In a sequential cohort study, we included 128 parents; 54 used the WWW-roadmap prior to consultation and 74 received care-as-usual. Both groups completed questionnaires after consultation, assessing empowerment, self-efficacy, parent and physician satisfaction, family centredness of care, and experiences using the tool. Additionally, 13 parents were interviewed.


Parents who used the WWW-roadmap looked up more information on the Internet. No other differences between parents and physicians were found. In the interviews, parents said that the WWW-roadmap was a useful tool for looking up information, exploring and asking questions, and maintaining a comprehensive picture.


Using the WWW-roadmap prior to consultation did not improve self-efficacy, satisfaction, or family centredness of care. Findings suggest positive experiences regarding factors determining empowerment, creating conditions for a more equal parent-physician relationship. The WWW-roadmap is useful for parents to explore their needs and find information, but more is needed to support empowerment in consultations.


consultation; family empowerment; family, centred care; information; paediatric rehabilitation


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