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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 progress in the project has been good despite challenges related to the corona pandemic, but the opportunities to do fieldwork have also been somewhat delayed. Researchers have been forced to use digital tools in the data collection, something that has been difficult in case studies involving nursing homes, home for people with learning disabilities etc. During the year, we have had regular digital meetings in the steering group where we have updated each other on the progress of the various case studies. At these meetings, we have discussed professional challenges and planned further work, such as digital internal seminars. In May 2021, the project was responsible for a symposium at a digital research conference in Bucharest at the European Social Work Research Conference where we discussed methodological challenges in the case studies. During the period, we have invested considerable work in the development of a master's course where the theme of user participation among people where participation is challenging. In addition, we have developed a Nordic PhD course in action / practice research to be conducted in the spring of 2022. In close collaboration with various Nordic user organizations, as well as representatives of the field of practice and education, planned and received financial support for a Nordic seminar on user participation in service development, research and education. This will be held in May 2022. The work of developing e-learning resources for use in teaching has also begun. The data collection has been completed in the various case studies, and in several of them the data has been analyzed and findings published in reputable international journals. We have started the analysis of data across the various case studies. Here we pose the central questions for the research project: How is user participation understood and practiced and what are the conditions for user participation across the sectors. In addition, extensive dissemination work is being conducted in the various case studies where the target groups have been practitioners in the health and welfare services but also students in teaching institutions Preliminary analysis of the findings from the case studies show that user participation is understood and practiced differently in working with the various user groups. Among persons with dementia and intellectual challenges, participation is understood as participation in the daily chores and activities of everyday life, while for user groups who are in contact with the child welfare service, NAV and health services, participation is understood from an administrative perspective. For many, user participation is a difficult concept to understand. Usually participation is understood at the individual level and in cases where the intention is to influence the development of services to the individual. Awareness of collective participation, where the purpose is to influence the development of services in general, is to a large extent lacking. The present analysis show that there are various factors that promote and inhibit participation. Among the key factors are characteristics of the organization, management, work culture, resources, socio-materiality, employees, users and the interaction between these and contact with relatives. Many of the same factors are present across sectors.

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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