Moving together – Towards structural and meaningful motor activation of people with profound intellectual and multiple disabilities

Status: Closed

Girl with severe intellectual and multiple disabilities in a wheelchair, with an attendant

Physical activity is positive for the physical and mental health and development of people with profound intellectual and multiple disabilities (PIMD). For this, these people need support that is tailored to the person and supports towards development and quality of life.

Why this research?

Tailored and structural support in motor activation is important for physical and mental health and development of people with PIMD, regarding the motor domain and in other functioning domains. For example, motor skills can be used in drinking, play activities and making contact. Interprofessional cooperation and clearly planned activities are needed to implement physical activity programs that are substantiated and tailored to the target group. It is important to connect to the wishes and needs of the target group. For the quality of support and quality of life of the target group, systematic evaluation of motor activation is important.
At the start of the project in 2017, we did not know which movement activities were used to support this target group and the content and quality of these motor activities. In addition, there was a need for a theory-based goal-oriented motor activity program and measurements to evaluate such a motor activity program. The aim of this PhD project was to develop and evaluate such a motor activity program, specifically for persons with PIMD.

About the research

During the research an motor activity program was developed to support people with PIMD in a way that suits the person and is meaningful. First, an inventory was made of practical initiatives that could be used within the exercise program. Next, the motor activity program based on scientific insights was developed in close cooperation with the practice partners. The motor activity program was used at one location to gain experience with its use in practice. Based on these experiences, the program was improved and used with a number of people with PIMD. It was evaluated how successful it was to structurally incorporate the program into the support. If this was successful, the effects were evaluated. A measuring instrument for mapping movement has been studied to see whether the effects of the program can be properly evaluated.

Subprojects

This research was performed in four steps:

Understanding the content and quality of exercise activities in daily practice.
The development and process evaluation of a personalized exercise program.
The quality of an instrument to measure exercise behaviour.
The use of the developed exercise program.

For practice

With the program “Moving together” you can systematically create an individually tailored motor activity program, based on collected information about physical activity and the opportunities in this area for a person with PIMD. This includes information about a person’s needs and wishes, as well as what an organization can offer.

Through the motor activity program “Moving together” the knowledge about physical activity of a person becomes clear. In addition, motor activities are guided from a person’s needs and wants, making them meaningful to the person. This is very important because only then can people with PIMD optimally benefit from the positive effects of exercise. The exercise program is carried out by daily supervisors, supported by the physical therapist and gymnastic instructor. The practical products are developed and used within a follow-up project Life ID intervention.

Research team

Leentje van Alphen is a movement scientist and worked as a PhD student at the University of Groningen and the Academic Workshop EMB. She currently works as a program manager of care innovation at Zonnehuisgroep Noord. This research was conducted between 2017 and 2021 under the supervision of Aly Waninge, Alexander Minnaert and Annette van der Putten.

This doctoral research was conducted from the Department of Inclusive and Special Needs Education, University of Groningen, the Hanze University of Applied Sciences and the ACC-PIMD, and co-funded by VIVIS (an alliance of institutions for people with visual impairment).

About the researchers

Aly Waninge

Management Team ACC PIMD
Lector
Hanze

What is your role within the Academic Collaborative Centre related to people with PIMD?
I represent Hanze University of Applied Sciences in the Management Team. I am also involved in various doctoral research projects within the ACC-PIMD as a second supervisor. These research themes include motor activation, participation and the quality of life of families who have a child with PIMD.

What do you hope to achieve?
My goal is to meet the need expressed by those involved in the day-to-day support of people with PIMD for theory-based, scientifically underpinned knowledge surrounding diagnostics and treatment. Both in practice and as a scientist, it is my strong desire to advocate for people with severe or profound visual, intellectual and motor-related disabilities. I want to contribute to the generation of new knowledge in the context of a sound scientific process that recognises the value of input from families and professionals.

Research projects by Aly binnen de AW-EMB

Annete van der Putten, full professor, managmentteam ACC PIMD

Annette van der Putten

Management Team AW EMB
Full professor
University of Groningen

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

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