Unique Lives, Unique Stories: Shadowing as a Way to Access the Personhood of People with High-Support Needs

Context: Recognizing the personhood of people with high-support needs, such as people with profound intellectual and multiple disabilities (PIMD) and people with late-stage dementia, is challenging due to their non-speaking communication. Yet, recognizing personhood is crucial for person-centred care. Objective: This study examines if and how personhood is reflected in the life of people with high-support needs. Method: A shadowing method was used, in which the participants were observed for two days and a running commentary was provided by the people surrounding the participants. Findings: Our research shows that all the participants had unique lives and unique stories, but some general themes and subthemes could be found and are brought together in a framework consisting of the following themes: 1) so-state; 2) person-driven including the subthemes ‘communication’, ‘behaviour’ and ‘preferences’; and 3) context-driven including the subthemes ‘care’, ‘social context’ and ‘activities’. This study highlights that personhood is relational and reflections are made on representing the knowledge of people with high-support needs. Limitations: The limited time the researcher was present in the residential care facilities, and the inclusion of only women, are limitations of this study. A reflection is also made on informed consent for people with high-support needs and the influence of the positionality of the researcher. Implications: This study demonstrates that getting to know someone with high-support needs is broader than just knowing the individual, but that the (social) context should also be considered. Elements of personhood are observable, and can be used to improve person-centred care and support.