Healthcare workers and caregivers’ perspectives on access to cancer screening for people with intellectual disabilities as revealed by system dynamics and group model building

People with intellectual disability (ID) face multiple barriers that limit their participation in cancer screening. This study applies a system dynamics approach, using group model building, to identify factors that influence cancer screening for people with ID and to explore how interconnections shape participation. Group model building workshops were conducted with healthcare professionals and support workers involved in caring for people with ID in the Netherlands. Participants mapped key variables and their interconnectedness influencing access to, and participation in, cancer screening for people with ID during the sessions. And during causal loop diagram assessment an independent group of similar participants validated the developed causal loop diagram. The workshop discussions were used to further interpret and contextualize the diagram. The causal loop diagram captures the central factors affecting cancer screening participation by people with ID. Rather than presenting isolated barriers, the model comprises of 48 variables visualizing the dynamic interactions within the broader system. The model identifies five interconnected thematic clusters representing the decision-making trajectory: (1) awareness of the screening invitation, (2) understanding information, (3) well-informed decision making, (4) access to participation, and (5) system-level visibility and oversight. A key finding is the critical role of the decision-making moments in the screening process, underscoring the need for a multidisciplinary approach to enhance participation. This study enhances the current literature by providing a deeper, system-level understanding of how interacting factors influence cancer screening among people with ID. Beyond the need for accessible information and accessible procedures, continuous support for decision‑making across different stages of the screening process and among involved stakeholders is essential to improve access to screening participation.