A hidden problem
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Introduction
Constipation is a common somatic problem among people with PIMD but, at present, it is extremely difficult for healthcare professionals to make an accurate diagnosis. People with PIMD are not able to clearly communicate what they are feeling and the criteria currently in use have not been adapted for people with PIMD. The first research step is to formulate an interim working definition based on a systematic review of the literature. In the second research phase, a consensus definition will be established, using the feedback provided by a Delphi panel of experts.
Benefits for practice
The aim is to make it possible to detect and diagnose constipation in people with PIMD sooner and more accurately and then to provide the most appropriate treatment for the individual concerned.
Call for Delphi panel participants
Marjolijn Wagenaar is looking for parents and healthcare professionals who are willing to participate in the next phase of the ‘Obstructions in communication’ research project on constipation among people with PIMD. Information will be gathered using the Delphi method. This means that participants will be sent a digital questionnaire comprising open questions, with space to enter additional comments. If you would like to help, please sign up by sending an email to Marjolijn Wagenaar.
About the researchers
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.
Related research of Aly
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.