Health in Down syndrome: creating a conceptual model

• DOI: 10.1111/jir.13007
• Publication Date: 2023-01-18T04:11:43Z
• Authors: S. L. Santoro; M. J. Cabrera; J. P. T. Co; M. Constantine; K. Haugen; K. Krell; B. G. Skotko; J. P. Winickoff; K. Donelan
• Keywords: Conceptual model; Conceptual framework

Abstract Background Down syndrome (DS) has a unique medical and psychological profile that could impact how health is defined on three dimensions: physical, social mental well‐being. Methods In 2021, we presented our proposed conceptual model to expert panels, four focus groups of parents individuals with DS age 0–21 years 13–21 through videoconferencing technology. Participants gave feedback discussed the concept in DS. Results Feedback from participants resulted iterative refinement model, retaining dimensions health, modifying constructs within those dimensions. Experts agreed have concerns necessitate creation validation syndrome‐specific model. We present key themes identified final for Conclusion Health multi‐dimensional, multi‐construct focused relevant causal effect indicators. This can be used future research develop measure status.