Het belang van personhood: een exploratie van persoonsgerichte zorg en personhood voor mensen met hoge ondersteuningsnoden

Person-centred care and support places the whole person in the centre of care and support. The focus is hereby not only on the disabilities or illnesses of the person, but on getting to know the person in all their aspects. To deliver person-centred care and support, it is therefore important to acknowledge the personhood of the person receiving the care and support. However, understanding and acknowledging personhood can be challenging when an individual has high-support needs and is non- or minimally-speaking, such as people with profound intellectual and multiple disabilities and people with late-stage dementia. These individuals have limited symbolic awareness and function on a sensorimotor level of cognitive functioning. Both groups typically require care and support in almost every aspect of their life. The aim of this doctoral dissertation is to explore person-centred care and personhood for people with high-support needs by defining person-centred care and personhood for these groups (Chapter 2 and 3) and accessing and mapping personhood (Chapter 4, 5 and 6). The first part of this doctoral dissertation is about defining. Chapter 2 presents a rapid literature review in which the preconditions, methods, outcomes and challenges of person-centred care for people with profound intellectual and multiple disabilities are described. This review shows that person-centred care can be seen as an umbrella term with different conceptualisations, methods and focuses. This diversity in the application of person-centred care leads to sometimes conflicting results. In Chapter 3, a concept mapping study is described in which elements of personhood are identified by family members of people with profound intellectual and multiple disabilities and people with late-stage dementia, staff members of residential care facilities and scientific experts. Seven elements were found for people with dementia: identity, vulnerabilities, preferences, personal approach and interaction, experiences of the social context, social background, and vision of life. Also, seven different overarching elements for people with profound intellectual and multiple disabilities were found: capabilities, preferences and experiences, social relations, life story, profile of personal characteristics, communication, and basic safety. Those elements formed the basis for the second part of this dissertation focusing on accessing and mapping personhood. Chapter 4, 5 and 6 are consecutive studies, in which accessing and mapping personhood of the same six participants with high-support needs were the central focus. In Chapter 4, their family members described how they give meaning to the personhood of their relative with high-support needs in an interview study. They described this by focusing on the past, the present and the future. The stories of the family members highlighted the importance of those family relationships and the co-creation of care. In Chapter 5, a shadowing study is described, in which the six participants were shadowed for two days to see how personhood was reflected in their lives. Their personhood was described by themes such as a basic attitude called a so-state, by behaviour, communication and preferences on a person-driven level, and by the influence of the context. In Chapter 6, a multimethod case study is presented, in which methods from educational sciences and methods from design research were combined. The study shows that providing an overview of who a person is, is possible using those research methods, which were complementary and provided different insights. This doctoral dissertation shows that getting to know a person, within the (care) relationships, is important in person-centred care. Personhood can be accessed and mapped, but the multifaceted nature of the concept, with a central role for relations, embodiment and temporality, should be considered. One of the implications of this doctoral project, alongside some (ethical) reflections, limitations and other implications, is that small actions in which the personhood of an individual is acknowledged, can have a big impact. The findings of this doctoral project, which were part of a bigger interdisciplinary project, were turned into a practical toolkit which can be used in practice.