Case study 2B: persons with profound intellectual disability

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.  


Case study 1: dementia


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.