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?
I am an assistant professor at the Department of Special Needs Education of the University of Groningen. My focus as a researcher at the Academic Collaborative Centre related to people with PIMD is the quality of life of the parents and siblings of people with PIMD.
What do you hope to achieve?
My aim is to raise awareness of – and recognition for – the vital and intensive role that parents and siblings play in the life of a person with severe multiple disabilities. The purpose of my research is to gain an understanding of the quality of life of these relatives and what it means to be the parent or sibling of a person with PIMD. The clearer our understanding of, say, which factors have a positive or negative influence on the wellbeing of parents, the better the support provided by professionals and carers can be tailored to their needs and wishes.