PIMD Knowledge Agenda
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copyright AW EMB
Introduction
Recent years have seen a relative upsurge in scientific research into people with PIMD. An overview of the knowledge derived from such research is a useful resource for those involved in supporting people with PIMD. Most of what we do at the Academic Collaborative Centre related to people with PIMD (ACC-PIMD) is inspired by questions that we receive from those involved in the day-to-day support of people with PIMD. We already have a PIMD Research Agenda comprising questions from parents. We created this agenda in collaboration with EMB Nederland (previously BOSK) and Handicap NL.
The next step is to conduct research that will lead to the drawing up of the PIMD Knowledge Agenda. Our aim is to find out what questions healthcare professionals are facing, based on what they come across in their day-to-day work.
Benefits to practice
Using the input of these healthcare professionals, we will draw up a knowledge agenda prioritising the themes that they deem the most important in their support for people with PIMD. We will also take into consideration what information is already available in scientific literature and where the most promising research opportunities lie. This approach will help to ensure that future research remains focused on actual needs.
About the researcher
What is your role within the Academic Collaborative Centre related to people with PIMD?
Within the Academic Collaborative Centre, as a senior researcher, I focus on research aimed at supporting the relatives of people with PIMD, such as parents, brothers, and sisters, specifically looking at their quality of life. Additionally, I am a assistent professor at the University of Groningen, Department of special needs eduction where I teach courses related to people with intellectual disabilities, including PIMD.
What do you hope to achieve?
I aim to bring attention and recognition to the important and intensive role that parents, brothers, and sisters play in the life of someone with PIMD. By conducting research, we gather knowledge about the (lived) experiences, and what it means to be a parent, brother, or sister of someone with PIMD. Additionally, I want to develop – together with relatives- practical tools that make their lives a bit easier or more fulfilling.