Growing up does not always happen smoothly. This applies particularly to young people with a chronic disease or disability, who have to overcome a number of exceptional difficulties. As these young people often have a long and intensive experience of care, the transition from child to adult care is of particular interest to them. Care is not always optimally tuned to the needs of those on the border between childhood and adulthood. This qualitative research looked at what young people want and are able to achieve, and what happens in practice in the consulting room.
It mapped out what these young people want and expect from healthcare providers. To gain an understanding of this process, our research centred on what these young people already know as well as what self-care they are already able to do themselves. To be able to 'stand on their own feet' later, they must learn to manage their own care by themselves. How can they do this? What do these young patients want themselves? And what are they already able to achieve?
Initiatives and Cooperating Partners
The participatory qualitative study was initiated in collaboration with the Erasmus MC Sophia Children's Hospital and the Erasmus School of Health Policy & Management of the Erasmus University Rotterdam. In this qualitative research, the 'On Your Own Feet' research team collaborated with nurses and specialists of the Erasmus MC Sophia Children's Hospital. A number of bachelor students from the Rotterdam University of Applied Sciences also participated. The research was funded by the Netherlands Organization for Health Research and Development (ZonMw) and was made possible by the young patients and their parents.
Research Design
The participatory qualitative study consisted of two phases:
- What do young people with chronic conditions want and what can they do?
- What happens in the doctor's consultation room?
The qualitative research project was followed by a large quantitative research project and subsequently resulted in the 'Action Plan and Implementation Programme 'On Your Own Feet Forward! '.
Results
On the 19th of April 2007, the participatory qualitative research was concluded with the National Conference 'Ready? Go!', held at the World Trade Centre in Rotterdam. At the conference, the research findings were presented to all parties involved: young people, their parents, care professionals at the Erasmus MC Sophia Children's Hospital, representatives of patient interest groups, and other researchers. The attendants were invited to participate in workshops where they could exchange experiences and express their needs. Furthermore, a large information market was present and the conference was concluded with a LOUNGE with a DJ! During the conference the publication 'On Your Own Feet, Young People with Chronic Conditions: What do they want and what can they do in healthcare?' was presented, and a list of Ten Tips for Transition was compiled.
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