OJKO project
Status: On going
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The OJKO project is an international collaboration project between the universities of Leuven (Belgium) and Groningen. With the OJKO project, we want to better understand how the development of children with PIMD occurs, how to explain changes (such as gaining or losing skills) over time, and what we can do to support the development of these children. Development is a complex topic and there’s little research on the development of these children. The OJKO project is a first step.
OJKO 1.0
In 2013, OJKO 1.0 started. We looked at different areas of development, such as motor skills, communication, interaction and social-emotional development. We also looked at environmental factors that may influence development. We focused on very young children, aged between 6 months and 4 years at the start of the measurements. To gather information, we visited them regularly at home or in nurseries. There we did tasks and games with the children, made video recordings together with parents or caregivers, and also talked to the parents/caregivers.
We have learned a lot from the results of OJKO 1.0. Predicting the exact development of a child with PIMD remains difficult, but we have seen changes in functioning in different areas in each child. To see changes in the development of children with PIMD, we need to focus on the small signs that indicate change. We also found that the development of these children is very unique, like a fingerprint.
OJKO 2.0
The results of the OJKO 1.0 research project have led to a follow-up study; OJKO 2.0. In this study, we want to take a closer look at the development of children with PIMD. What changes in their skills on a daily, weekly or monthly base? And how can we explain these changes? We are looking at the development of children under the age of 12, and are paying special attention to the role of parents and caregivers as important partners in the child’s development.
For practice
The OJKO project contributes to sound assessment, knowledge and understanding of the development of childeren with PIMD. Firstly, through the OJKO project, we are contributing to the development or improvement of assessment tools developed specifically for this group of children. For example, the knowledge gained has been used in the revision of the Behavioural Appraisal Scale a tool for assessing maximal functional abilities. Secondly, the OJKO project provides concrete knowledge and information about different areas of development. This can help parents and professionals to act more confidently in stimulating the child’s skills. Thirdly, the research contributes to a better understanding of the development of this group of children. It highlights the importance of a holistic view of the child and a positive approach to development, as well as the importance of collaboration between development partners. These insights can be used to better support the development of children with PIMD, and give them the opportunity to develop to their full potential.
Research team
Het team van onderzoekers en begeleiders bestaat uit: Ines Van keer, Bea Maes, Maartje van Uffelen, Arjen van Assen, Marleen Wessels, Wendy Post en Annette van der Putten.
About the researchers
What is your position within the Academic Collaborative Centre PIMD?
As a PhD student, I am involved in research on motor development in young children with severe intellectual and multiple disabilities (PIMD). This research is part of the OJKO projectOJKO project (Monitoring
Young Children with Developmental Delay). Within this project, the development of children with EMB has been followed for several years. We are currently working on a follow-up study to get more information about motor development and factors that influence this development.
What do you hope to achieve?
I find it important to investigate how the environment can best support the (motor) development of children with EMB. With this research I would like to contribute to the knowledge about the motor development of these children. From my previous experience as a caregiver, I have noticed that scientific knowledge can make a positive contribution to the daily lives of these children.
Research projects by Maartje binnen de AW-EMB
What is your role within the Academic Workplace PIMD?
As a postdoc researcher, I contribute to ongoing research within the academic workplace, based on my expertise in research into the development of young children with PIMD. My main interest is the context surrounding the child. I work part-time for KU Leuven (Belgium), where I am a member of the INOVHO research team within the Parenting and Special Education research unit and coordinator of the Magenta project that is committed to parents of children with additional care needs.
What do you want to achieve?
Parents of children with PIMD have to take on different roles in their daily lives: parent, caregiver, doctor, advocate, administrative manager and so on. I would like to contribute to supporting parents in their parental role and creating the preconditions so that they can focus on the essence: loving their child.
Research projects by Ines binnen de AW-EMB
What is your role within the Academic Collaborative Centre related to people with PIMD?
I am a senior researcher at the University of Groningen. The focus of my research is the assessment of people with PIMD. Assessment generates insight into these individuals’ abilities, preferences, wishes and needs, so that the support offered to them can be tailored accordingly.
What do you hope to achieve?
I hope that more information becomes available about the quality of the assessment of people with PIMD. At present, very few assessment methods are available that have been developed specifically for this target group and analyzed for psychometric quality. I also want my research to contribute to the improvement of the psychometric quality of an instrument that measures functional abilities: The BAS-R. My aim is to strengthen the links between research and practice.
Research projects by Marleen binnen de AW-EMB
What is your role within the Academic Collaborative Centre related to people with PIMD?
My research focusses on methods and data-analysis for the assessment of development in people with PIMD. I am primarily focused on the analysis and modelling of the development of young children with PIMD. Furthermore, I work as an assistant professor focused on child and family welfare services for families with complex and multiple problems.
What do you hope to achieve?
My aim is to use thorough analysis to gain a better insight into the development of children with PIMD, so that the support provided by professionals and families can be more closely tailored to these children’s needs. I hope that my contribution to the work of the Academic Collaborative Centre related to people with PIMD will help improve the support given to people with PIMD.
What is your role within the Academic Collaborative Centre related to people with PIMD?
I represent the University of Groningen in the Management Team of the ACC-PIMD. I am a full professor in Special Needs Education at the University of Groningen. My goal is to develop a better understanding of how best to support children and adults with severe or profound intellectual and multiple disabilities and their families. To this end, we are conducting various research projects focusing on the people with disabilities themselves, their families and the professionals who support them, as well as the relationship between these three groups. My role is to supervise these research endeavours and to prepare applications for new projects. I also lecture our own Special Needs Education students on a regular basis, as well as giving other lectures in this country and abroad.
What do you hope to achieve?
I want us to arrive at a place where we recognise children and adults with PIMD as a group that has the same rights to quality of life as everyone else – a life in which they can reach their full potential and can determine for themselves what their priorities are, to the greatest extent possible. That means conducting quality research, founded on equality-based collaboration with practice partners.
Research projects by Annette binnen de AW-EMB
- A hidden problem
- After a while; a study into the sustainable implementation of Programma Perspectief within the support of people with PIMD
- LIFE ID Intervention
- Tailored physical activity
- Moving together – Towards structural and meaningful motor activation of people with profound intellectual and multiple disabilities