'[I would like] a place to be alone, other than the toilet' - Children's perspectives on paediatric hospital care in the Netherlands

Background Although it is widely recognized that children are willing, capable and legally entitled to be active participants in their health care, parents are generally invited to evaluate paediatric hospital care and services rather than children themselves. This is problematic because parents cannot serve as the only spokespersons for the perspectives and experiences of children. Objective To investigate children's experiences with and perspectives on the quality of hospital care and services in the Netherlands, and how they think care and services could be improved. Design A qualitative study incorporating different participatory data collection methods, including photovoice and children writing a letter to the chief executive of the hospital. Setting Paediatric departments of eight hospitals in the Netherlands (two teaching and six regional). Participants Children and adolescents (n = 63) with either acute or chronic disorders, aged between 6 and 18 years. Results The research results provide insights into children's health and social well-being in hospitals. Important aspects of health, like being able to sleep well and nutrition that fits children's preferences, are structurally being neglected. Conclusion The participatory approach brought children's ideas 'alive' and generated concrete areas for improvement that stimulated hospitals to take action. This demonstrates that participatory methods are not merely tools to gather children's views but can serve as vehicles for creating health-care services that more closely meet children's own needs and wishes.