On Your Own Feet Continued - Quantitative study
The quantitative research project was built on the research findings of the participatory qualitative research. Both studies chart the perspectives of young people with chronic diseases on their healthcare and their development towards independence.
Children and young people are the main users of care, but seem barely involved in the care process. Hospital's patient satisfaction surveys tend to emphasize parents rather than young patients. The literature shows that parents and young people often disagree on the quality of care and quality-of-life issues.
Initiative and Cooperation Partners
The research project was a collaboration between the Rotterdam University of Applied Sciences ('Transitions in Care' expertise Centre, Research Centre Innovations in Care), the Erasmus MC Sophia Children's Hospital, and the Erasmus School of Health Policy & Management of the Erasmus University Rotterdam. The research was conducted in cooperation with the market research organization 'Team Vier' and was funded by the Dutch charity foundation Kinderpostzegels.
The opinions of young people were mapped using an Internet survey. Exactly the same questions were also put to the parents of these young people. The main topics addressed were their general background, their medical condition and their experience of it, their quality of life and the impact of the condition on their lives, their welfare, their care preferences in the transition phase, and their competencies in self-care and self-management.
A total of 1039 adolescents and 779 parents completed the comprehensive Internet survey. In 593 cases, we received a completed questionnaire from both young people and their parents. The results of the survey were compiled in the research report 'On Your Own Feet Ahead. Towards Independence in Care for Young People with Chronic Conditions'. Based on the findings of the study, the report gave recommendations and tips for caregivers, parents and young people.
The relevant research findings from the qualitative and the quantitative studies in the 'On Your Own Feet' programme were compiled in the PhD thesis of the programme leader, AnneLoes van Staa. A hard copy of the PhD thesis can be ordered here (no costs involved) or downloaded from the Erasmus University repository:
- Staa, A.L. van, (2012). On Your Own Feet: Adolescents with chronic conditions and their preferences and competencies for care. Dissertation Erasmus University Rotterdam, the Netherlands. ISBN 978-90-79059-03-4.