| dc.description.abstract | Background: In recent years, scholars of citizenship internationally have argued that current dominant medical and care-based understandings position people with dementia solely as in need of care while not sufficiently attending to the socio-political context influencing their lives. In Norway the last two dementia plans have promoted the participation and involvement of people living with dementia in a dementia-friendly society, as well as services built on theories of person-centred care. However, they scarcely address issues of citizenship or discrimination in the nursing home context. More than 30,000 people live long-term in nursing homes in Norway. International and national research suggests that people living with dementia in nursing homes may experience that their freedom, autonomy and agency are restricted and that they may be at risk of occupational deprivation.
Purpose of the study: This thesis explores what characterises citizenship practices for persons living with dementia in nursing homes. While many discussions of citizenship are of a theoretical or conceptual nature, this thesis explores the practices of citizenship in mundane aspects of life. The thesis aims to produce knowledge about how residents in nursing homes enact and express their citizenship in ordinary and everyday circumstances and explores the possible contributions of adding citizenship theories to the interpretive practices in nursing homes. To explore the concept and phenomenon of citizenship as mundane practices I use theories of occupation and narrativity to interpret the ways in which citizenship can be materialised in practice. In doing so, the thesis aims to provide knowledge of relevance for future developments in policy and professional practices addressing issues of citizenship in this context.
Methods: Citizenship is explored as a phenomenon emerging relationally and in an embodied way in ordinary life situations. Using an ethnographic design fieldwork was conducted in two nursing homes in the south-west region of Norway. The primary method of gathering data was participant observation. In addition, individual interviews and group interviews were conducted with staff and support staff. Participant observation focused on common areas in the nursing homes and provided a strategy for including residents’ perspectives in a way that did not rely on coherent language or abstract thought, recognising that both actions and verbal expressions are narrative in nature. Narrative analysis was performed, which involved constructing stories of occupational and social engagement in the nursing homes that were then interpreted through theories of citizenship, occupation and narrativity. The study was assessed by the Norwegian Regional Ethics Committee and the Norwegian Centre for Research Data before commencing.
Results: The first article of the thesis is a literature review exploring how citizenship for persons with dementia living in nursing homes is conceptualised and described in the research literature. The article concludes that citizenship practices may be under pressure from certain nursing home structures and calls for more research exploring citizenship that encapsulates both residents’ apparent needs and their abilities as citizens. The second article explores how people living with dementia in nursing homes express and enact their everyday citizenship. We suggest that residents can express their citizenship through the phenomenon of becoming, implying a continued opportunity for development and growth, in line with own occupational potential in ordinary life situations. However, a citizenship of becoming emerges in vulnerable moments and presupposes that institutional perceptions of 4 activities as something offered need to be broadened to include supporting residents’ natural desires to do within the mundane. The third article explores the potentially transformative characteristics of a citizenship lens. Constructed narratives of mundane social and occupational situations in the nursing homes are interpreted in terms of an activistic lens of citizenship, acknowledging that residents can communicate desires and resistance towards environments that constrain citizenship opportunities. The findings shed light on a phenomenon of co-ownership between residents and staff that requires a professional competence in actively interpreting residents as intentional.
Discussion and implications: The discussion sheds light on the social phenomena of becoming and co-ownership, as well as the inclusive and exclusive tensions inherent to a citizenship lens. It is argued that the characteristics of the occupational context mean going beyond the right for, or provision of, occupational engagement to support residents’ opportunities to act in line with own occupational potential. This requires paying attention to residents’ unique ways of expressing desires and capabilities and creating occupational contexts of familiarity supporting residents’ opportunities to act. Further, it is discussed that interpretive practices in nursing homes can include or exclude residents from access to participation and thus opportunities to practice citizenship. It is argued that group-based interpretations of persons with dementia, based on a lens of pathology, may limit residents’ opportunities for citizenship. Applying a lens of pathology can lead us to interpret behaviour as expressing dementia, e.g., viewing withdrawal or passivity as symptoms (apathy) and thus as normal or expected. A difference between recognising residents’ rights as citizens to quality services and recognising their continuous role of responsibility towards their community is discussed, highlighting the recognition of their medical needs, their need for care and safety, and their rights and capabilities as citizens. The discussion points to three possible implications of citizenship for regulations in the field, suggesting increased attention towards issues of agency, interpretive practices and discrimination in future dementia policy. Conclusion: This study contributes to knowledge of the practices and characteristics of citizenship in the more advanced stages of dementia in the long-term care context. It contributes to increased knowledge about the occupational context of citizenship, shedding light on citizenship as vulnerable practices enacted within mundane aspects of nursing home everyday life. Theories of citizenship were found to provide a perspective in which to question current understandings and practices, challenging pathologising views and logics underlining nursing home care. This thesis adds to our knowledge of citizenship by bringing forward the phenomena of becoming and co-ownership. Co-ownership is suggested as an active professional and institutional responsibility to ensure that nursing homes are communities where residents are interpreted as intentional and capable, as well as supported to share responsibilities and spaces and influence occupational opportunities. Becoming is seen as the personal dimension of development and growth, in which people with dementia act in line with own occupational potential. In the everyday lives of people living with dementia in the nursing homes, becoming was found to emerge in vulnerable and fleeting moments, thus needing continuous recognition and support to be upheld. Through the work on this thesis, citizenship emerges as something more than provision of rights or occupational opportunities, but as the recognition and support of inherent and naturally occurring expressions of agency in the mundane.
Paper I: Sund, M., Hanisch, H., & Fjetland, K. J. (2022). Citizenship for persons with dementia in nursing homes: A literature review. In K. J. Fjetland, A. Gjermestad, & I. M. Lid (Eds.), Lived citizenship for persons in vulnerable life situations: Theories and practices (pp. 29–45). Scandinavian University Press. https://doi.org/10.18261/9788215053790-2022-02
Paper II: Sund, M., Jaeger Fjetland, K., & Hanisch, H. (2023). Within moments of becoming – Everyday citizenship in nursing homes. Scandinavian Journal of Occupational Therapy, 30(2), 239–250. https://doi.org/10.1080/11038128.2022.2085621
Paper III: Sund, M., Hanisch, H., & Fjetland, K. J. (2023). Activistic citizenship in nursing homes: Coownership in the mundane. Dementia, 22(3), 594–609. https://doi.org/10.1177/14713012231155307 | en_US |
