Researcher (postdoc) Care Demand of the Chronically Ill and Disabled
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Would you work with me? The process and impact of involving young people with a chronic condition in research and innovation.
Schelven, F. van. Would you work with me? The process and impact of involving young people with a chronic condition in research and innovation. Utrecht: Nivel, 2022. 202 p. Proefschrift van de Universiteit van Maastricht
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The involvement of young people with a chronic condition in decisions related to health and social care is receiving increasing attention. After the ratification of the United Nations Convention on the Rights of the Child (UNCRC) in 1989, the awareness that young people have a right to have a say in matters that affect them accelerated. From that time onwards, research and innovation in the field of health and social care has increasingly been carried out with young people with a chronic condition, rather than solely for them. The UNCRC is now ratified by almost all countries in the world, with the Netherlands being among one of the first.
This thesis:
- describes the background on working together with health service users in research and innovation projects. This is also called Patient and Public Involvement (PPI);
- describes the developments in the existing literature on PPI of young people with a chronic condition;
- addresses the experiences of young people with a chronic condition with PPI through a panel. For three years, a youth panel was followed and illustrates the lessons learned from the PPI of these young people;
- addresses the involvement of individual young people with a chronic condition in the separate research and innovation projects in the Care and Future Prospects program;
- provides in-depth insight into the perspectives of young people with a chronic condition and researcher on meaningful impact of PPI in research;
- adresses the main findings and reflections and describes practical implications and recommendations for future research.
Na de ratificatie van het Verdrag van de Rechten van het Kind van de Verenigde Naties in 1989 nam het bewustzijn toe dat jongeren het recht hebben om inspraak te hebben in zaken die over hen gaan. Sindsdien worden onderzoeks- en innovatieprojecten in de zorg steeds vaker met jongeren met een chronische aandoening gedaan, in plaats van alleen voor hen. Het verdrag is nu geratificeerd in bijna alle landen in de wereld, met Nederlands als één van de eersten.
In dit proefschrift wordt beschreven:
- de achtergrond van het samenwerken met zorggebruikers in onderzoeks- en innovatieprojecten beschreven, ook wel Patient andPublic Involvement (PPI) genoemd;
- de ontwikkelingen in de bestaande literatuur over PPI van jongeren met een chronische aandoening;
- de ervaringen van jongeren met een chronische aandoening met PPI via een jongerenpanel en de geleerde lessen van de betrokkenheid van deze jongeren;
- de betrokkenheid van individuele jongeren met een chronische aandoening bij de afzonderlijke onderzoeks- en innovatieprojecten in Zorg én Perspectief;
- inzicht in de perspectieven van onderzoekers en jongeren met een chronische aandoening op betekenisvolle impact van PPI in onderzoek;
- de belangrijkste bevindingen en reflecties daarop en aanbevelingen voor de praktijk en toekomstig onderzoek.
This thesis:
- describes the background on working together with health service users in research and innovation projects. This is also called Patient and Public Involvement (PPI);
- describes the developments in the existing literature on PPI of young people with a chronic condition;
- addresses the experiences of young people with a chronic condition with PPI through a panel. For three years, a youth panel was followed and illustrates the lessons learned from the PPI of these young people;
- addresses the involvement of individual young people with a chronic condition in the separate research and innovation projects in the Care and Future Prospects program;
- provides in-depth insight into the perspectives of young people with a chronic condition and researcher on meaningful impact of PPI in research;
- adresses the main findings and reflections and describes practical implications and recommendations for future research.
Na de ratificatie van het Verdrag van de Rechten van het Kind van de Verenigde Naties in 1989 nam het bewustzijn toe dat jongeren het recht hebben om inspraak te hebben in zaken die over hen gaan. Sindsdien worden onderzoeks- en innovatieprojecten in de zorg steeds vaker met jongeren met een chronische aandoening gedaan, in plaats van alleen voor hen. Het verdrag is nu geratificeerd in bijna alle landen in de wereld, met Nederlands als één van de eersten.
In dit proefschrift wordt beschreven:
- de achtergrond van het samenwerken met zorggebruikers in onderzoeks- en innovatieprojecten beschreven, ook wel Patient andPublic Involvement (PPI) genoemd;
- de ontwikkelingen in de bestaande literatuur over PPI van jongeren met een chronische aandoening;
- de ervaringen van jongeren met een chronische aandoening met PPI via een jongerenpanel en de geleerde lessen van de betrokkenheid van deze jongeren;
- de betrokkenheid van individuele jongeren met een chronische aandoening bij de afzonderlijke onderzoeks- en innovatieprojecten in Zorg én Perspectief;
- inzicht in de perspectieven van onderzoekers en jongeren met een chronische aandoening op betekenisvolle impact van PPI in onderzoek;
- de belangrijkste bevindingen en reflecties daarop en aanbevelingen voor de praktijk en toekomstig onderzoek.
The involvement of young people with a chronic condition in decisions related to health and social care is receiving increasing attention. After the ratification of the United Nations Convention on the Rights of the Child (UNCRC) in 1989, the awareness that young people have a right to have a say in matters that affect them accelerated. From that time onwards, research and innovation in the field of health and social care has increasingly been carried out with young people with a chronic condition, rather than solely for them. The UNCRC is now ratified by almost all countries in the world, with the Netherlands being among one of the first.
This thesis:
- describes the background on working together with health service users in research and innovation projects. This is also called Patient and Public Involvement (PPI);
- describes the developments in the existing literature on PPI of young people with a chronic condition;
- addresses the experiences of young people with a chronic condition with PPI through a panel. For three years, a youth panel was followed and illustrates the lessons learned from the PPI of these young people;
- addresses the involvement of individual young people with a chronic condition in the separate research and innovation projects in the Care and Future Prospects program;
- provides in-depth insight into the perspectives of young people with a chronic condition and researcher on meaningful impact of PPI in research;
- adresses the main findings and reflections and describes practical implications and recommendations for future research.
This thesis:
- describes the background on working together with health service users in research and innovation projects. This is also called Patient and Public Involvement (PPI);
- describes the developments in the existing literature on PPI of young people with a chronic condition;
- addresses the experiences of young people with a chronic condition with PPI through a panel. For three years, a youth panel was followed and illustrates the lessons learned from the PPI of these young people;
- addresses the involvement of individual young people with a chronic condition in the separate research and innovation projects in the Care and Future Prospects program;
- provides in-depth insight into the perspectives of young people with a chronic condition and researcher on meaningful impact of PPI in research;
- adresses the main findings and reflections and describes practical implications and recommendations for future research.