Extensive services in peoples home: users, care workers and service systems perspectives and practices

Background: The increase in people receiving community care in Norway for the last 25 years has mainly been among young adults (age 18-49). This group comprises people with intellectual disabilities, mental health problems, neurological diseases and traumatic injuries. Some receive a few hours a week of practical help whereas others have extensive service needs. For the group with extensive services, the care becomes an integrated part of their life in a phase of the life-course where most people live active and independent lives. For these users, quality of care is essential for quality of life. The increasing numbers is in part due to deinstitutionalisation. Aim: The aim of this study was to explore care practices for people with extensive services needs provided in their home/group home. It was conducted in partnership with users, professionals and service providers (local governments). The target group was young adults (age 18-49). Design: The study had a practice research design, in collaboration between research, tertiary education, local governments, professionals and user associations. The project was carried out in six municipalities (local government jurisdictions)and 15 living units. There were work packages on the perspectives of users, professionals and service administrations. Data gathering included observations, interviews (individual and groups) and dialogue conferences. Dissemination: Dissemination has been a core task for the project, comprising dialogue conferences, scientific articles, publications for a wider audience, participation in local meetings, oral presentations and teaching. An edited volume targeted at a readership of professionals and students was published in Norwegian in 2019. Results: Results suggest that the role of ideals and ideology in shaping staff behaviour is reduced. Whereas normalisation was important in the early post-institution years, the current practice seems to a larger extent to be a response to practical do-abouts and the role of formal day and week-plans. This shift appears to be related to changes in governance systems, primarily the introduction of New Public Management and the use of quantitative quality indicators. The role of front line management (practice leadership) appears to be crucial for the quality of services, and the results suggest the importance of three functions of this front-line management: the mission, motor and mentor functions. Another finding is that both users, the family and direct care staff were critical to the recent increase in size of group homes (number of users in the same house), and argued that this undermines the political aim of individually tailored services. Staff members also point out that increasing size tend to imply more variation in needs among residents, and this also undermines their possibility to deliver individualized services. Family and care workers were very critical to lack of individually tailored employment or day-time activities. They pointed at lack of alternatives, segregation and that the family resemblance with employment was missing. Some argued that the daytime activities has evlved in a negative direction recent years. However, the residents themselves were not that negative about day time activities and tended to point to the few aspects that did resemble typical employment. Another result was that the practical running of the care system appeared to undermine the ideal of self-determination. Thus, the results suggest developments that were in conflict with both earlier (normalisatio, equality, participation) and the more recently highlighted policy ideals: self-determination and individually tailored services.

Formålet for prosjektet var å undersøke tjenestene til voksne med behov for omfattende omsorgstjenester, og med potensiale for utvikling av tjenestene i samarbeid med kommunene og/eller bofellesskapene. Prosjektet har bidratt inn i utviklingsprosesser på blant annet følgende områder: a) behovsundersøkelser ved oppstart av omorganisering og nybygging av boliger til målgruppen i en kommune, b) kompetansehevingsprogram i en kommune, c) bidrag til konfliktløsning mellom pårørende og ansatte i et bofellesskap, d) bidrag inn i en ny kommunal plan for utviklingshemmete, e) undersøke med formål å utvikle primærkontaktrollen i en kommune, f) bidrag i forbindelse med flytting til mer selvstendige bofermer i en kommune, og g) skriftliggjøring av beboeres forventninger til ansatte i et bofellesskap. Alle bidragene er slikt som inngå i kompliserte lokale prosesser, der virkninger vil avhenge av mange faktorer og der det kan være vanskelig å være helt presis på hva som er prosjektets unike bidrag.

Background: During the last two decades, the main increase in number of people receiving community nursing/care services are adults in the age 18-67, in particular 18-49, that live in their own home or a group home. This trend is related to deinstitutionalisation. Many people receive extensive supports at home, in particular people with intellectual disabilities or neurological diseases. For these people the quality of care and interaction with staff becomes an essential and integrated part of their quality of life. Research on the reforms of the care system has mainly addressed the framework of peoples' lifes, whereas less attention has been paid to assuring that care practices are according to the political ideals guiding the transfer to community care, such as active participation and self-determination. Recent trends do also give reason for worry about care practices. The proposal is a practice oriented research project conducted in collaboration between a research center, three educational units (NTNU, Nord-Trøndelag and Sør-Trøndelag University College) and three types of stakeholders: local authorities (service providers), practitioners (care workers) and users/ user representatives. It will involve all partners in all parts of the project, including data gathering and action research/ service development. Action will be based on earlier research, theory of care and Quality of Life, research conducted in group homes and the perspectives and experiences of the three groups of stakeholders. The perspectives of stakeholders constitute three crosscutting work packages: - Users: self-determination and active supports - Care as profession:the role of the employee, challenges and dilemmas in extensive care in peoples home - Policy and practice: the system and policies related to provision of extensive care The project will develop and disseminate experiences related to good practices and bring education and practice together.