Abstract
Person-centred care (PCC) has been a prominent topic in the healthcare industry for several decades. Although there are various conceptualizations and definitions of PCC, the fundamental idea is that the focus of care should be on the 'person' rather than the 'patient' (Entwistle & Watt, 2013). This means that to practice true PCC, it is essential to understand who a person is, what they value in life, and acknowledge their personhood. However, for non-verbal persons receiving care, recognizing their personhood can be challenging for formal and informal carers. Most current tools and methods rely on cognitive and verbal abilities that these individuals may not possess. For persons with limited symbolic awareness and communicative abilities, it is also much more challenging to understand their feelings, needs, and thoughts (Chadwick et al., 2019). As a result, a growing need exists to develop more inclusive and comprehensive methods for defining and collecting personhood in such cases. My PhD research is part of an interdisciplinary project between anonymized. The project aims to enhance person-centered care for non-verbal individuals living in care facilities, particularly those with late-stage dementia or profound intellectual and multiple disabilities. The project aims to develop methods and tools to define and collect personhood using design and to use these findings to create a tool or toolkit that can offer the necessary handholds for formal and informal carers to integrate personhood into the PCC planning of non-verbal individuals. Currently, in its second year of a planned four-year trajectory, the project has completed the first phase, creating a framework to define personhood through focus groups, immersion sessions, and literature reviews. In the second phase, design research methods such as cultural probes and experience-centered design sessions are being conducted in six different care facilities to research how personhood can be accessed, made visible, and collected. The next step will be to see how these design research methods can be translated into tools for carers and integrated into the current PCC planning. Link to the conference theme By using participatory design research methods within the project, we hope to gain a better understanding of the lived experiences of our participants in order to improve their lives. We aim to give back to these participants by offering them direct feedback, insight, and tools on how to improve the PCC offered to these non-verbal participants in real-time. In the long run, we hope to redefine what PCC and design for non-verbal persons can mean by creating tools that incorporate the personhood of these non-verbal persons into their daily planning while also giving formal and informal carers the necessary tools to make this incorporation process easier. Attending the IASDR 2023 conference would be a valuable opportunity to connect with other design researchers working on similar challenges, share what the project has achieved so far, and make connections for future steps to further develop what design and care can offer to each other.
Keywords
personhood, interdisciplinary, non-verbal, participatory design
DOI
https://doi.org/10.21606/iasdr.2023.733
Citation
De Coen, A.(2023) Personhood: defined, collected, and integrated, in De Sainz Molestina, D., Galluzzo, L., Rizzo, F., Spallazzo, D. (eds.), IASDR 2023: Life-Changing Design, 9-13 October, Milan, Italy. https://doi.org/10.21606/iasdr.2023.733
Creative Commons License
This work is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License
Conference Track
doctoralpapers
Included in
Personhood: defined, collected, and integrated
Person-centred care (PCC) has been a prominent topic in the healthcare industry for several decades. Although there are various conceptualizations and definitions of PCC, the fundamental idea is that the focus of care should be on the 'person' rather than the 'patient' (Entwistle & Watt, 2013). This means that to practice true PCC, it is essential to understand who a person is, what they value in life, and acknowledge their personhood. However, for non-verbal persons receiving care, recognizing their personhood can be challenging for formal and informal carers. Most current tools and methods rely on cognitive and verbal abilities that these individuals may not possess. For persons with limited symbolic awareness and communicative abilities, it is also much more challenging to understand their feelings, needs, and thoughts (Chadwick et al., 2019). As a result, a growing need exists to develop more inclusive and comprehensive methods for defining and collecting personhood in such cases. My PhD research is part of an interdisciplinary project between anonymized. The project aims to enhance person-centered care for non-verbal individuals living in care facilities, particularly those with late-stage dementia or profound intellectual and multiple disabilities. The project aims to develop methods and tools to define and collect personhood using design and to use these findings to create a tool or toolkit that can offer the necessary handholds for formal and informal carers to integrate personhood into the PCC planning of non-verbal individuals. Currently, in its second year of a planned four-year trajectory, the project has completed the first phase, creating a framework to define personhood through focus groups, immersion sessions, and literature reviews. In the second phase, design research methods such as cultural probes and experience-centered design sessions are being conducted in six different care facilities to research how personhood can be accessed, made visible, and collected. The next step will be to see how these design research methods can be translated into tools for carers and integrated into the current PCC planning. Link to the conference theme By using participatory design research methods within the project, we hope to gain a better understanding of the lived experiences of our participants in order to improve their lives. We aim to give back to these participants by offering them direct feedback, insight, and tools on how to improve the PCC offered to these non-verbal participants in real-time. In the long run, we hope to redefine what PCC and design for non-verbal persons can mean by creating tools that incorporate the personhood of these non-verbal persons into their daily planning while also giving formal and informal carers the necessary tools to make this incorporation process easier. Attending the IASDR 2023 conference would be a valuable opportunity to connect with other design researchers working on similar challenges, share what the project has achieved so far, and make connections for future steps to further develop what design and care can offer to each other.