Perceptions of client dependency (completed)
- Start: 2017
- Status: completed
What is it like, to need to wait for help because you cannot dress yourself due to a multiple disability? As a parent, do you dare speak up if you’re not happy about some aspect of the care for your child with a mental disability? Questions such as these play a key role in a study into the perceptions of dependency among people with a disability and their family members, commissioned by the Ministry of VWS (Public health, welfare and sports) and performed by the University of Humanistic Studies, completed in 2018.
In the project ‘Perceptions of client dependency', researchers mapped out how people with a disability and their family members experience dependency. They also examined how to prevent negative perceptions of dependency, and whether people with a disability can personally influence the care they receive or the associated policy making. The researchers closely followed people with a disability and their caregivers throughout the Netherlands to experience and to hear first-hand what it is like to be dependent.
People with a disability participated in the study, for example by making photographs to show how they experience dependency. A professional photographer also contributed to the project. A selection of the photographs was displayed in the Outsider Art Gallery of care organisation Cordaan in the Hermitage Museum in Amsterdam.
A page has been set up specifically for people with a disability, with an animation and further explanations: www.uvh.nl/afhankelijkheid (in Dutch).
- Prof. Evelien Tonkens, professor of Citizenship and Humanisation of the Public Sector
- Prof. Margo Trappenburg, professor of Citizenship and Humanisation of the Public Sector
- Dr. Femmianne Bredewold, lecturer and researcher
- Ellen Grootegoed, lecturer and researcher
- Simon van der Weele, researcher
Results and publications
- The research report can be downloaded from the website of the state government (in Dutch). The report was presented to Minister Hugo de Jonge on 23 May 2018.
- The article De zorgverlener moet meer zijn dan een voorbijganger (‘The caregiver should be more than a passerby’) by Simon van der Weele and Evelien Tonkens was published in Trouw newspaper.
- The book Zorgen als ambacht. Afstemmen op afhankelijkheid van mensen met een beperking (‘Caring as a craft; being responsive to the dependency of people with a disability’) was published by Uitgeverij de Graaff (Utrecht) in 2019.
- Hoe beleef je afhankelijkheid van zorg als je een beperking hebt? (press release, in Dutch)
- Pottenkijkers voor de gehandicaptenzorg (press release, in Dutch).
A study into the perceptions of dependency among people with a disability and their family members, commissioned by the Ministry of VWS.