This project has consisted of various sub-projects. We have conducted an international literature review on factors that promote and inhibit participation among residents with dementia in nursing homes. In this article it is pointed out that resident participation can be understood in a multifaceted perspective where residents themselves, staff and their practices, residents, relatives, the environment and organizational factors, and various tools or methods, which are all factors that affect the opportunities for participation in the residents' everyday lives (Strøm & Slettebø, 2021).

We have also conducted interviews with 24 employees at three nursinghome wards (from two nursing homes). In addition, we have had three focus groups with relatives of the residents. We are now in the process of analyzing the interviews together with employees at the nursing homes. In the analysis, we will study what the employees understand by participation, how participation is practiced and conditions that promote / inhibit participation. Participation is often understood in an administrative perspective, ie how users can have an influence on measures and services vis-à-vis the administration. In the study of participation in nursing homes, we have become concerned that participation in nursing homes must be understood in terms of the residents' everyday lives and how they can influence participation in everyday activities. There are special challenges associated with participation among people with dementia, and this we would like to explore further, ie how employees meet and listen to residents with cognitive challenges. This analysis will be compared to the findings from the international analysis of the same conditions in the published article. We have also participated in meetings with the staff and with relatives where we have disseminated findings from the survey.

Strøm, A., & Slettebø, T. (2021). Factors affecting user participation for nursing home residents with dementia: a critical interpretive synthesis. European Journal of Social Work, 24(5), 828-851. https://doi.org/10.1080/13691457.2021.1964442

During the last phase of this case study researchers, practitioners, bachelor- students and user-organisations have been working on developing a practical guide for facilitation of “good participation practises” in health- and welfareservices, for use in one municipality.

Based on interviews of key persons, staff, family, and user organisation in the municipality a frame for the practical guide was developed. Bachelor- students carried out the interviews under supervision from researchers.

Several dialogue meetings and reflection meetings with staff, students and researchers were carried out in order to discuss and develop the guide. This resulted in a pilot version that were evaluated by staff and families prior of a finalised version.

In September 2021 the guide was finished. It can be downloaded from this link.

https://www.vid.no/site/assets/files/29975/veileder-om-gode-medvirkningspraksiser-sammen-med-personer-som-ikke-uttrykker-seg-med-ord-vid-1.pdf?313d9a

Late autumn 2021 and spring 2022 the practical guide will be implemented in the municipality.

Prior to the start of the case-study systematic searches in databases were carried out to identify research and updated knowledge about participation practises and specific models for participation for person with profound intellectual disability within health- and welfare services. The systematic searches revealed some knowledge about conditions for participation for this group (Talman 2016), as well as some methods for participation and communication like for instance OIVA (Koski, Martikainen, Burakoff, Launonen 2010), Active support (Bradshaw, McGill, Stretton, Kelly-Pike, More, Mackdonald, Eastop, Marks 2004), Intensive interaction (Weedle 2016) and MOVE for adults (Whinnery & Whinnery, 2012). One of the models, Cirle of security (Watson et al 2011) was found to address several aspects of participation, with integrated elements both on individual and systemic factors. None of the identified studies were adapting practice research design to generate knowledge.  

4 young adults with profound intellectual disability in two different municipalities are included in this case. They all live in their own flat in residential housings receiving support from the municipality. Both their family and staff are involved in the case-study. Observations, inspired by sensory ethnography (Pink 2016) was carried out in the everyday life, in order to get close to the perspectives of the young adults. In addition interviews with family and staff was conducted to get information about existing participation practises but also on what seems to hamper or enhance participation in everyday life. Several dialogue meetings and a day of sharing knowledge from research together with family and staff have also been carried out in order to assess existing participation practises and explore new models together.

Based on the data several relational, systemic and organisational conditions for participation are identified. The importance of trusting and sensitive relationship and the impact the institutional settings may have on the possibility to form these relations being of the most important findings.

One publication from this case is in process:

Gjermestad & Skarsaune (2020/21): Citizenship through supported decision-making together with persons with profound intellectual disabilities – resources and challenges in professional practices. Chapter in Fjetland, Gjermestad & Lid eds (2020/21) Citizenship in theory and practise. Universitetsforlaget.  

Status medio august 2020

In this case study, we have finished the collection of data and we have started analysing the data. One of the preliminary findings is that the nursing homes to a great extent succeed in facilitating for residents participation, both individually and on an organizational level. However, this type of practice is not described anywhere. In one of the nursing homes, the staff and next of kin are keen on developing a set of guidelines describing how user participation is understood and practiced. Hopefully this will bring more awareness of how to facilitate for participation among the residents with dementia and their relatives. Although guidelines are needed, many of the informants, especially the relatives, claim that the most important requirement for increasing power among the residents is more staffing. Close and personal relationships between residents/relative and the staff seem to be of vital importance for the residents’ well-being and quality of life which is the ultimate aim of participation. In nursing home 2, the response was related to opportunities for the development of communication skills and “timing” among the staff as well as possible new ways of interacting with relatives.

In this case study we have also carried out a systematic literature review on residents participation in nursing homes. All the data has been collected and is now in the process of being analysed and discussed. The preliminary findings indicate that a triadic perspective on user participation in nursing homes could be expanded. Methods and interventions available may appear to be a fourth player in these processes – co-residents may be the fifth. Additionally, the process and actors must be seen in the light of the identified organizational characteristics in the literature.