Patient participation’ in everyday activities in special care units for persons with dementia in Norwegian nursing homes

Abstract

Aim. The aim of this study was to explore ‘patient participation’ in everyday activities for persons with dementia living in special care units in nursing homes. Background. Studies about how ‘patient participation’ appears in the context of special care units for persons with dementia are lacking. Design. The study has an explorative design. Method. Grounded theory was chosen. Data collection was carried out by means of open observations and additional conversations with residents and personnel. Simultaneously, data analysis was performed with open, axial and selective coding. Findings. The findings showed that ‘patient participation’ concerned ‘A matter of presence’ as the core category. The other categories described as ‘presence of personnel’ and ‘presence of residents’, were strongly connected to the core category as well as to each other. Presence of personnel comprised three levels; being there in body, which required physical presence; being there in mind, which required presence with all senses based on knowledge and competence; and being there in morality which was understood as being fully present, as it was based on humanistic values and included the two other levels. Presence of residents comprised ‘ability and wish’ and ‘adaptation’. The presence of the personnel had a huge impact on the ability and will to participate of the residents. Organizational conditions concerning leadership, amount of personnel and routines as well as housing conditions concerning architecture and shared accommodation, could stimulate or hinder ‘patient participation’. Conclusions and implications. The study highlighted the great impact of the personnel’s presence in body, mind and morality on the participation capacity of the residents. The great importance of the nurse leaders was stressed, as they were responsible for organizational issues and served as role models. Group supervision of the personnel and their leaders would be an implication to propose, as these kinds of reflection groups offer opportunities to reflect on values, actions and routines.