Participation among adults with visual and severe or profound intellectual disabilities
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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.
Follow-up research investigated actual participation, as previously defined and categorised into the seven domains, to identify the domains in which participation occurs frequently and those in which it occurs less frequently 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.
Benefits to practice
In addition, an intervention was developed to improve participation among adults with VSPID. It is called ‘Care for Participation+’ (Zorg voor Participatie+) and includes the Participation Mind Map. During this intervention, carers are trained to work together with families and other disciplines to discover the wishes of clients in each of the seven domains and to then fulfill those wishes. ‘Care for Participation+’ is based on the conviction that the objective of care for people with VSPID should be to help them to discover their abilities and to support them in such a way that they can participate in as many areas of life as possible, as independently as possible.
On 26 October 2020, colleague Gineke Hanzen successfully defended her thesis on this subject and gained her PhD. Gineke has produced a brochure that outlines her research into participation among people in this target group and the research that she conducted on a method designed to improve their participation.
About the researcher
What is your role within the Academic Collaborative Centre related to people with PIMD?
In 2020, I completed my doctoral research on participation among adults with visual and severe or profound intellectual disabilities. Within the Academic Collaborative Centre related to people with PIMD, I am now conducting follow-up research on participation, as well as supervising students and researchers who are conducting their own research. I also work as a physiotherapist at Koninklijke Visio for clients with visual and intellectual disabilities.
What do you hope to achieve?
My ambition is to gain a better understanding of participation among people with visual and severe or profound intellectual disabilities. For these people, participation is not a given, which is why we have developed a tool that parents, other relatives and direct carers can use to investigate and identify participation options. The result is that adults with these disabilities get to engage in activities and enjoy experiences that may not usually be offered to them. We plan to research whether this tool can also be used for children and adults with PIMD.