Person-centered care and personhood: How to understand, access, record and integrate personhood in care context for person with high support needs who cannot verbally express themselves

Person-centered care has been on the health care agenda for several decades. To practice person-centered care it is important to have a clear picture of who a person is, or to put it differently, to recognize his/her personhood. Personhood is ensured by the presence of the other and is therefore something essentially social. However, it is difficult to know the personhood of people with high support needs, who have limited symbolic awareness and communicative abilities. The main goal of this doctoral project is to understand, access, record and integrate personhood in the care context for persons with high support needs who cannot verbally express themselves.

This doctoral project is part of an interdisciplinary project which is focused on the personhood of people with profound intellectual and multiple disabilities (PIMD) and people with dementia, who are in the later stages of dementia, as two exemplary groups of the total population of persons with high support needs. The present doctoral project is mainly focused on the group of persons with PIMD, for whom it is investigated how to 1) understand; 2) access and record; and 3) integrate personhood in their care context. However, in some studies the group of persons with dementia is also included. Part one, understand, consists of two studies. First, a rapid review (study 1) was conducted to gain insight in the applicability of person-centered care for people with PIMD. It describes methods, preconditions, characteristics, and challenges of person-centered care for this target group. Secondly, a concept mapping study (study 2), which aims to describe the constituting elements of personhood for people with dementia and people with PIMD, was performed. The second part, access and record, consists of three studies. First, an interview study (study 3) was conducted to gain access to the personhood of persons with dementia or PIMD by understanding the lived experiences of family members of the personhood of their relatives with high-support needs by using interpretative phenomenological analysis. Second, a shadowing study (study 4) was performed to gain access to the personhood of persons with dementia or PIMD by observing the participants for two days to see how the personhood is reflected in their everyday lives. The interview study (study 3) and the shadowing study (study 4) form the foundation of the fifth study. In a case study (study 5) the combination of a cultural probes study and a study using experience-centered design (realized within the context of another PhD study) are combined with the interview study (study 3) and the shadowing study (study 4) to access personhood for persons with PIMD. The third and last part of this doctoral project, integrate, consists of one study. A Delphi and vignette study (study 6), with vignettes based on the findings of the earlier studies, are combined. The main goal of this study is to get insight in how experts and care organizations would facilitate person-centered care based on the personhood as described in the vignettes, resulting in an insight in how personhood is integrated in person-centered care.