Stronger Together
Status: On going
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Every parent wants the best for their family. But it’s not always easy, especially if you have a child with severe or profound intellectual and multiple disabilities (PIMD). We set up the Stronger Together (Sterker Samen) project to support such families. This collaborative initiative launched by the University of Groningen and Hanze University of Applied Sciences, financed by the Netherlands Organisation for Health Research and Development (ZonMw), falls under the Academic Collaborative Centre related to people with PIMD. Our aim is to work alongside families to identify what constitutes quality of life for them and what type of care and support they need, and then to consider how best to establish this care and support.
Subprojects
In subproject 1, we will use an online questionnaire to find out what constitutes a family’s quality of life and which factors play a role. We will also conduct a number of interviews with families to gain an understanding of families’ exact healthcare and support needs. Families will only be asked to complete one set of questionnaires and will be invited to consider participating in just one interview. Some family members will be asked to complete more questionnaires than others, but completion will not take more than around 80 minutes in total. It is not necessary to complete all the questionnaires in one sitting. The interview, which is optional, will last between 60 and 90 minutes.
In subproject 2, we will work together with families and healthcare professionals to develop products designed to improve their family’s quality of life, based on the information gathered during subproject 1. The families and healthcare professionals will also be consulted on the format that these products should take. They could, for example, include training sessions, a website or a family ‘toolbox’.
In subproject 3, we will test and evaluate the new products together with a number of families before they are put into use at the national level.
Benefits to practice
We will organise meetings across the Netherlands at which parents, researchers and healthcare professionals can share their knowledge and experiences. The knowledge derived from this research project will help healthcare professionals to arrive at a better understanding of how best to support families. And they will have products they can use to help families improve their quality of life.
About the researcher
What is your role within the Academic Collaborative Centre related to people with PIMD?
I am a PhD student affiliated to the Stronger Together (Stronger Toghether) research project, which is a collaborative venture between the University of Groningen and Hanze University of Applied Sciences, funded by the Netherlands Organisation for Health Research and Development (ZonMw). The aim of the project is to improve the resilience and wellbeing of families with a child (aged 0-30) with PIMD.
What do you hope to achieve?
My goal is to increase insight into the factors that influence the wellbeing of families with a child with PIMD in order to improve the support offered to these families. I also hope to help make this a project in which scientists and those with practical knowledge gained from day-to-day involvement can work together as equals.
Research projects by Nicole binnen de AW-EMB