How to understand, access, record, and integrate identity in care contexts for persons with high support needs who cannot speak for themselves, through the use of design.

This PhD project aims to change the long-term health care towards more person-centered care (referred to as PCC) by increasing knowledge and developing, through design, methods, and tools to better understand, access, record, and integrate the identity of persons with high support needs who cannot speak for themselves. This project focuses on two defined groups of persons with high support needs: persons with dementia (referred to as PwD) and persons with profound intellectual and multiple disabilities (referred to as PwPIMD) living in a care residence. First, this project will explore the conceptualization of identity for PwD and PwPIMD. This will be done in an interdisciplinary way (together with experts from psychology and biomedical sciences) using several design methods involving the persons with high support needs themselves, their (in)formal and professional carers, and industry experts. Secondly, this project will develop, implement, and evaluate innovative design methods, tools, and strategies to access and record the identity of PwD and PwPIMD that do not rely on the cognitive and verbal capabilities of the persons but capture their identity in novel and multimodal ways (e.g. toolkit, approach, etc.). Thirdly during this project, the conditions for, the process of, and the effects of implementing the methods and strategies to integrate the identity of persons with high support needs in long-term care will be studied by an interdisciplinary team wherein design (experts) collaborates with experts in the field of Psychology and Biomedical sciences.