Thematic Groups

The thematic groups focus on exploring specific themes, developing practical tools, and conducting literature reviews to strengthen the knowledge base. Both the core team and the thematic groups are closely involved in developing and providing training initiatives, actively contributing to the professional development of care professionals in the field of pain in people with intellectual disabilities (ID). Because members of the thematic groups work at various care institutions, they foster collaboration between these institutions and PainCare Unlimited.

Results of the thematic groups to date:

• Overview of behavioral observation instruments for pain in people with intellectual disabilities
• Practical guide for detecting, diagnosing, and treating Persistent Physical Complaints (PPC) in people with intellectual disabilities
• Training plan aimed at care professionals and vocational education
• Training for caregivers and therapists

Plans of the thematic groups for 2026:

• The diagnostics and treatment thematic group focuses on investigating the applicability of interdisciplinary imaging for chronic pain, as developed in the guideline "Pain in People with Intellectual Disabilities" (SKILZ, 2025): Format for interdisciplinary consultation on chronic pain
• The psychosomatics thematic group focuses on disseminating and implementing the developed PPC guide in care organizations.
• The education thematic group focuses on:
  • Raising awareness of pain and how to manage it among care professionals working with people with intellectual disabilities. To this end, the thematic group regularly addresses various pain-related themes via LinkedIn and mailings.
  • Spreading knowledge through the "train the trainer" principle: training experts who can pass on knowledge.
  • A pilot for developing a lesson package on pain detection for caregivers.
  • Establishing contacts with vocational training programs to implement the topic of pain in education focused on care for people with intellectual disabilities.
  • Providing training and presentations for educational and knowledge organizations upon request.

All thematic groups will continue working with (information from) the developed guideline "Pain in Adults with Intellectual Disabilities" in 2026.

In addition to the activities of the thematic groups, work in 2026 will focus on:

• Implementation of the guideline "Pain in Adults with Intellectual Disabilities" (Pain in People with Intellectual Disabilities - SKILZ), published in 2025. This involves collaboration between various care organizations. Interested parties can contact: info@pijnzorgonbeperkt.nl
• Networking to broadly raise awareness of the topic of pain and intellectual disabilities among care organizations, professional associations, knowledge organizations, and policy organizations.
• Collaborating with various parties in the areas of implementation, knowledge sharing, research, and grant applications.
• Developing and disseminating tools for personalized pain care for people with intellectual disabilities.
• Developing an e-learning module on pain for clients and caregivers in collaboration with VGN Academy.
• Disseminating the principles of pain- and anxiety-free care (PROSA Network) for people with intellectual disabilities.
• Research into:
  • Emotion regulation and co-regulation focused on pain in people with intellectual disabilities
  • Personalized pain signaling
  • A measurement instrument for orofacial pain (pain in the mouth and face) in people with intellectual disabilities