Participation among adults with visual and severe or profound intellectual disabilities
Status: On going
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It is not clear to carers and families what exactly ‘participation’ means for people with visual and severe or profound intellectual disabilities (VSPID). Support tends to focus more on this target group’s disabilities than on their abilities. Helping people with VSPID towards participation entails increasing awareness among carers and bringing about a change in attitude. In this research project, families, carers and experts all contributed their insights, on the basis of which a picture was built of what exactly participation means for people with VSPID.
Participation Mind Map
The findings were translated into a Participation Mind Map: a practical tool that defines participation and names the seven participation domains, giving practical examples of participation in each domain. Follow-up research investigated actual participation, as previously defined and categorised into the seven domains, to identify the domains in which participation is good and those in which it is less good and in which opportunities are being missed. Those working in the field can use this information to identify the domains that require extra attention in order to improve participation.
About the researchers
What is your role within the Academic Collaborative Centre related to people with PIMD?
In 2020, I completed my PhD research: ‘Participation of adults with visual and severe or profound intellectual disabilities’. Within the Academic Collaborative Centre for PIMD, I am working on follow-up research on participation. And, I guide students and researchers in their own research. I also work as a physiotherapist at Royal Visio. In this position, I work for people with visual and intellectual disabilities.
What do you hope to achieve?
Gain insight into the participation of people with visual and severe or profound intellectual disabilities. Participation is not self-evident for them. Because of that, we have developed a tool to gain insight into this. This tool is intended for parents, relatives, and direct support professionals. This intervention promotes that adults with these disabilities can engage in various activities and experiences in different environments that are normally not so obvious. We also want to investigate whether this tool can be used for adults and children with PIMD.
Research projects by Gineke binnen de AW-EMB