How do relatives of persons with dementia experience their role in the patient participation process in special care units?

Aims and objective To explore the role of relatives in the patient participation process for persons with dementia living in special care units in Norwegian nursing homes, with focus on everyday life. Background Studies exploring the experience of relatives of persons with dementia as to their role in the patient participation process are limited. Design The study had an explorative grounded theory design. Method Data collection was carried out by interviews with twelve close relatives. Simultaneously, data analysis was performed with open, axial and selective coding. Results The relatives' role in the patient participation process was experienced as transitions between different roles to secure the resident's well-being, which was understood as the resident's comfort and dignity. This was the ultimate goal for their participation. The categories being a visitor', being a spokesperson', being a guardian' and being a link to the outside world' described the different roles. Different situations and conditions triggered different roles, and the relatives' trust in the personnel was a crucial factor. Conclusions The study has highlighted the great importance of relatives' role in the patient participation process, to secure the well-being of residents living in special care units. Our findings stress the uttermost need for a high degree of competence, interest and commitment among the personnel together with a well functioning, collaborative and cooperative relationship between the personnel and the relatives of persons with dementia. The study raises several important questions that emphasise that more research is needed. Relevance to clinical practice Relatives need to be seen and treated as a resource in the patient participation process in dementia care. More attention should be paid to initiating better cooperation between the personnel and the relatives, as this may have a positive impact both on the residents' and the relatives' well-being.