User participation through interest organisations: A qualitative study of representation, strategies and impact for people in vulnerable life situations

All rights reserved. No part of this publication may be reproduced or transmitted, in any form or by any means, without permission.This thesis explores collective user participation by focusing on interest organisations representing people in vulnerable life situations. In this thesis, collective user participation-or simply user participation-refers to activities where service users aim to affect the development of services provided by the welfare state. Service users' participation in developing better welfare services is a goal for service users, professionals and politicians and is anchored in legislation and national and supranational documents. However, user participation can be particularly challenging for people in vulnerable life situations, who may depend on support to participate or be represented by others. Hence, interest organisations are vital in promoting these groups' interests. With both collective user participation and interest organisations related to these groups having received little attention in research, the thesis provide new knowledge on these topics by focusing on representation, strategies and impact. The overarching research question in the thesis is as follows: How do representatives in interest organisations perceive user participation? Paper l address the research following questions: How do people in vulnerable life situations participate in interest organisations? What are the dilemmas related to the representation of people in vulnerable life situations? The paper is based on interviews with 14 representatives of interest organisations. These people represented people with dementia, intellectual disabilities, substance use problems, asylum seekers, children in contact with the child protection service and children of parents with substance use problems. The thematic analysis resulted in the development of two main themes. The first, namely participation as representatives of the organisations, revealed that a spokesperson's role often depends on competence and that the users of public services rarely obtain such a position. However, people with experience in using public services participate as living examples in external activities, increasing the groups' visibility through their physical presence and their stories. The second theme was titled participation in organisational activities. The extent to which people with lived experiences participate in formal meetings varies, but they are often consulted by the organisations and attend events and informal gatherings. Notably, people in vulnerable situations interact with and, thus, influence the service-providing organisations. Paper 2 addresses the following research question: How are interest organisations for people in vulnerable life situations influencing public actors, and what are the perceived impacts? The second paper is based on analysis from the same interviews as the first paper. In the analysis, three themes were developed related to how the informants described their organisations’ dealings with services, municipalities, politicians and other public actors. The cooperative strategy refers to participation as an arena for collaboration and partnership in which they assumingly would share interests and goals. The oppositional strategy shows how the participants would use open conflict and confrontation as a tool for influence, often through the media and complaint systems. The third strategy—negotiation—illustrates how organisations would manoeuvre between being critical and constructive while maintaining a relationship with public actors. Paper 3 addresses the following research question: What types of impact are associated with collective user participation for people in vulnerable life situations in the research literature? The paper is a scoping review of the research literature. The finding shows that, at the individual level, user participation could facilitate personal empowerment among the involved users and affect the involved professionals’ knowledge. However, some users also experienced disempowerment because of their involvement in user participation activities. Impacts at the organisational level were that user participation resulted in changes in attitudes, knowledge, culture, professional practice, interventions, an increased number of employees, organisational development and changes in policies. This thesis discusses how the participation of people in vulnerable life situations can be understood as direct, assisted, indirect and via others. It also addresses the terminology related to organisations representing people in vulnerable life situations. Here, I argue for describing them as interest organisations rather than service user organisations. Further, the thesis discusses how organisations manoeuvre in a landscape of power and tokenism. Finally, I discuss the challenges and opportunities to make and identify impacts associated with participation. The novel contribution of this thesis is that it provides new knowledge about user participation through interest organisations by focusing on representation, strategies and impacts concerning user participation for people in vulnerable life situations. Paper 2 addresses the following research question: How are interest organisations for people in vulnerable life situations influencing public actors, and what are the perceived impacts? The second paper is based on analysis from the same interviews as the first paper. In the analysis, three themes were developed related to how the informants described their organisations' dealings with services, municipalities, politicians and other public actors. The cooperative strategy refers to participation as an arena for collaboration and partnership in which they assumingly would share interests and goals. The oppositional strategy shows how the participants would use open conflict and confrontation as a tool for influence, often through the media and complaint systems. The third strategy-negotiation-illustrates how organisations would manoeuvre between being critical and constructive while maintaining a relationship with public actors. Paper 3 addresses the following research question: What types of impact are associated with collective user participation for people in vulnerable life situations in the research literature? The paper is a scoping review of the research literature. The finding shows that, at the individual level, user participation could facilitate personal empowerment among the involved users and affect the involved professionals' knowledge. However, some users also experienced disempowerment because of their involvement in user participation activities. Impacts at the organisational level were that user participation resulted in changes in attitudes, knowledge, culture, professional practice, interventions, an increased number of employees, organisational development and changes in policies. This thesis discusses how the participation of people in vulnerable life situations can be understood as direct, assisted, indirect and via others. It also addresses the terminology related to organisations representing people in vulnerable life situations. Here, I argue for describing them as interest organisations rather than service user organisations. Further, the thesis discusses how organisations manoeuvre in a landscape of power and tokenism. Finally, I discuss the challenges and opportunities to make and identify impacts associated with participation. The novel contribution of this thesis is that it provides new knowledge about user participation through interest organisations by focusing on representation, strategies and impacts concerning user participation for people in vulnerable life situations. Paper l: Gathen, J. M., Slettebø, T., & Skjeggestad, E. (2023). The participation of people in vulnerable situations in interest organisations: A qualitative study ofrepresentatives views. Journal of Social Policy, 1-18. https://doi.org/10.1017/S0047279423000089 Paper II: Gathen, J. M., Slettebø, T., & Skjeggestad, E. (Submitted manuscript). Three strategies of user participation. Interest organisation representatives' views on how they make an impact on service development. Paper III: Gathen, J. M., Slettebø, T., & Skjeggestad, E. (2022). User participation among people in vulnerable situations at service level. A scoping review exploring impact for individual stakeholders and services. Nordisk Välfårdsforskning [Nordic Welfare Research] 7(1), 52-67. https://doi.org/10.18261/nwr.7.1.4publishedVersio