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HELSEVEL-Gode og effektive helse-, omsorgs- og velferdstjenester

Challenges of participation when service users autonomy is challenged/restricted in health and welfare services.

Alternative title: Muligheter og hindringer for brukermedvirkning når tjenestemottakernes autonomi er utfordret i helse- og velferdstjenester

Awarded: NOK 11.7 mill.

The project Challenges of participation when service users' autonomy is challenged in health and welfare services (CHAPAR project) is a collaboration between researchers from OsloMet - Oslo Metropolitan University (OsloMet), Western Norway University of Applied Sciences (HVL) and Vid Scientific University (VID). The main research questions have been: 1. what is meant by user participation for people in vulnerable life situations; and 2. what inhibits and promotes opportunities for participation for people in vulnerable life situations? The research questions and research design were developed in a pilot project in 2013-2014 in collaboration with various user groups, practitioners, students, researchers and teachers. The target group for the project has been people in vulnerable life situations and has included five case studies in services for the elderly with dementia, adults with intellectual disabilities, people with substance abuse problems, young immigrants and refugees, and services for children in low-income families. The case studies have been conducted in close collaboration between researchers, practitioners and service users which has created mutual learning. The case studies have developed new models for participation and contributed to an in-depth understanding of what constitutes conditions for participation in practice. Each case study has conducted international literature studies that have identified and summarised key findings on understanding and conditions for participation. The findings show that user participation is understood and practised differently in encounters with different user groups. Participation among people with dementia and intellectual disabilities is understood as participation in the daily tasks and activities of everyday life. Participation for user groups that have contact with the services, such as child welfare, social services, is understood from an administrative perspective. User participation is a difficult concept. Most of the participants understand user participation individually, with the aim of influencing developments in their own case. There is less awareness of collective participation, with the aim of influencing service development in general. The project has developed new knowledge about collective participation and preconditions for this, ie in social services, child welfare, in interest organisations and housing projects for homeless. Various factors promote and inhibit participation. The key factors are characteristics of the organisation, such as management support, knowledge and understanding among management and employees, resources, work culture and socio-material conditions and interaction between management, employees and users, and in some cases contact with relatives. Through action research, the project has facilitated local learning and organisational development and knowledge-based practice. The collaboration has also resulted in organisational development, including changes in the professional environment, expertise, recruitment, training, new routines and information for users and relatives. The pandemic has been a challenge for the project, limiting opportunities for physical contact and meetings. Nevertheless, progress has been good, partly through creative use of digital communication tools in data collection, analyses and dissemination of results. The size of the project and the geographical spread of researchers have required extensive coordination. The steering committee has met digitally every month and facilitated mutual information, coordination of various activities and planning of various activities; workshops, collaboration with international researchers, seminars, conferences, teaching modules, dissemination etc. In 2021 CHAPAR organised a digital symposium at the European Social Work Research Conference in Bucharest and in 2022 a Nordic conference on user participation with people in vulnerable life situations. The conference brought together over 100 Nordic participants, users, practitioners, teachers and researchers.The conference was planned and implemented in collaboration with nordic interest and user organisations, as well as organisations and representatives from the fields of practice and education. Contact with educational institutions has been central. The researchers have disseminated knowledge from the CHAPAR project in bachelor's, master's and PhD programmes at HVL, OsloMet and VID. Several master's students have submitted their theses based on data from the project. The project has provided the basis for two doctoral theses. In addition, two other PhD students have been associated with the project. In 2022 CHAPAR organised a Nordic PhD course in action research. The project has also developed a master's course and developed e-learning resources. There is still a collaboration between the researchers in the project, ie two books will be published and a new PhD course in 2024.

I Charpar-prosjektet har forskerne generert kunnskap om forståelse og forutsetninger for medvirkning med personer i sårbare livssituasjoner på tvers av brukergrupper og sektorer. Et sentralt funn er at brukermedvirkning blir forstått og praktisert forskjellig. Mens medvirkning for personer i omsorgsboliger handler om deltakelse i hverdagslivet, forstås medvirkning i en forvaltningskontekst for brukere i kontakt med forvaltningen. Medvirkning forstås som oftest som individuell medvirkning, mens det er mindre bevissthet om kollektiv medvirkning, med formål om å påvirke det generelle tjenestetilbudet. Medvirkning forstås både som et mål og som et middel. Analyser viser at det er mange forhold som fremmer og hemmer medvirkning. Noen forhold er knyttet til kjennetegn ved brukerne, som alder, modenhet og kognitiv fungering, andre forhold er kjennetegn ved de ansatte som holdninger, kunnskaper og ferdigheter. Muligheter for medvirkning påvirkes av organisasjonskultur, arbeidsmiljø, ledelse og sosiomaterielle betingelser, og relasjonen mellom fagfolk og brukerne, og eventuelt pårørende. Beslutningsstøtte og meningsarbeid har stor betydning for å legge til rette for medvirkning for personer med utviklingshemming og barn. Funnene er av stor betydning for hvordan medvirkningsprosesser kartlegges, evalueres og forskes på, og for hvordan det legges til rette for undervisningen av helse- og sosialarbeidere. Review-studier har oppsummert sentrale funn om forståelsen av og forutsetninger for medvirkning i det internasjonale forskningsfeltet og bidratt til utvikling av kunnskapsbasert praksis. Prosjektet har resultert i mange publikasjoner i internasjonale anerkjente tidsskrifter og fremstår som selvstendige bidrag inn i forsknings- og kunnskapsfeltet. Forskningssamarbeid med brukere, pårørende, praktikere og forskere (samskapning) har stått sentralt i alle fasene av forskningsprosessen. I mangel på språk og store kognitive utfordringer blant deltakerne, har det vært nødvendig å utvikle og anvende utradisjonelle forskningstilnærminger som dialogmøter, erfaringskonferanser, refleksjonssamlinger i tillegg til tradisjonelle. Aksjonsforskning har lagt til rette for lokal læring- og organisasjonsutvikling, og det har resultert i lokal organisasjons- og tiltaksutvikling. I alt 19 forskere har utviklet betydelig forskningskompetanse, og prosjektet har bidratt til kompetanseheving blant yngre forskere gjennom arbeidet med doktoravhandlinger. Tilknytningen til de respektive utdanningene har gitt muligheter for formidling av kunnskap fra Chapar-prosjektet på bachelor-, master- og PhD-nivå. Forskerne har utviklet emner om brukermedvirkning på ulike nivåer, og brukere har deltatt i undervisningsopplegg. Det er utviklet et kurs om aksjonsforskning på Phd-nivå som inngår i den ordinære undervisningsporteføljen. Det er utviklet e-læringsverktøy og to fagfellevurderte antologier er under arbeid og vil bli pensumlitteratur.

In order to meet the population's complex health and social problems in the future there is a need for a renewal of the health and welfare services and educational institutions. Official documents have ambitious goals with regard to participation of the service users, but participatory practice tends to be more messy and complicated that what the policy rhetoric suggest. What are the conditions for participation when services users autonomy is being challenged and/or restricted? Some service users do not meet the ideals of being autonomous, informed citizens and for some their autonomy is restricted by legal regulations, organisational factors and professional practices. Through five case studies the conditions for participation will be explored in the following sectors: services for elderly with dementia, adults with intellectual disabilities, people with substance abuse problems, immigants and refugees in Introduction Programme and services for children in low-income families. On the basis of a collaborative research approach, involving practitioners, educators, researchers and service users, New models for participation will be developed and tested out. The Project does also includes a mixed method impact analysis of the results of the collaborative research approach. The overall aim of the project is to develop knowledge about conditions for participation when service users' autonomy is being challenged and/or restricted, and in addition to develop new innovative models how to deal with these challenges in practice. Another objective is to study how collaborative research approaches can be organized to facilitate knowledge sharing and development among the stakeholders.

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HELSEVEL-Gode og effektive helse-, omsorgs- og velferdstjenester