User involvement among persons with dementia living in nursing homes

Researchers Tor Slettebø and Anita Strøm


Why is user participation difficult to attain in health and welfare services?  This case study aims to develop knowledge about challenges and conditions for participation for persons with dementia living in nursing homes, and the research questions are: What do persons with dementia, their next of kin and staff in nursing homes understand by participation, what are their experiences and how could participation be increased?

The data is based on 24 interviews with nursing staff in three different wards, four focus groups of people next of kin and participant observation of the interactions between persons with dementia and staff in the nursing wards. We will also have interviews and conversations with persons with dementia according to their ability to express themselves and use observational data of the interactions between the persons with dementia and staff as a supplement. The observational data will be collected in November 2019 to February 2020.

We have just started the thematic analysis of the data collected, but a preliminary finding is that fthe staffs’ understanding of participation to a great degree relates to the perception of autonomy. They try to facilitate for autonomy in various ways, ie by knowing the biography of the person, family contact, developing thrusting relationships, offering choice in various situations etc. The data from interviews with next of kin and the observational data will be further analyzed in the beginning of 2020. It is therefore difficult to conclude and point at outcomes at this point of the study. The findings will result in a part 2 where we will develop new innovative models for participation and evaluate these and chart factors that promote and hinder participation in this context.