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

Mattijs W. Alsem, Marjolein Verhoef, Jessica Braakman, Karen M. van Meeteren, Renate C. Siebes, Marian J. Jongmans, Johanna M. A. Visser-Meily, Marjolijn Ketelaar, The WWW, roadmap study group

Research output: Contribution to journalArticleAcademicpeer-review

Abstract

Background: 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. Methods: 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. Results: 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. Conclusion: 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.
Original languageEnglish
Pages (from-to)623-636
JournalChild: Care, Health and Development
Volume45
Issue number5
DOIs
Publication statusPublished - 1 Jan 2019
Externally publishedYes

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