English summary

User involvement in the Nordic region: a knowledge compilation about methods and effects in the welfare sector
The knowledge compilation deals with user involvement in relation to vulnerable adults in the area of social welfare, including adults with disabilities, mental illness, substance abuse or experiences of homelessness. The author is Associate Professor Jens Ineland, Umeå University.
“User” is in itself a very broad and ambiguous term. In this knowledge compilation, users refer to adults who are recipients of support and aid initiatives in the social health and welfare sector. This means that research into children’s and young people’s involvement has not been included in this knowledge compilation. The background data is primarily Nordic research literature published between 2010 and 2022, as well as two questionnaires issued to researchers and experts in the Nordic region.
Taking this as a starting point, and together with a review of additional literature such as evaluations, reports and manuals, the report contains three different chapters of results. The first chapter describes policies and practical initiatives for enhanced user involvement in the Nordic countries. The second describes which methods are used in studies of user involvement and on which target groups various user involvement initiatives are focusing. The third chapter describes the effects of user involvement, the main motives for user involvement that appear in the material and the knowledge contributions that emerge in Nordic research.
The final section of the report identifies knowledge gaps and development areas in the continued work for enhanced user involvement in the Nordic region.

The most important results

Broad support for user involvement

There is a broad consensus in the Nordic region on the significance of user involvement and the importance of getting users more involved in both decision-making and in the design of various support and aid initiatives.
This is expressed in a large number of political visions, guidelines and manuals that have been adopted in the Nordic countries, and in the production of a large number of reports, surveys and evaluations on user involvement in the Nordic region. The arguments for implementing user involvement are often based on the fact that there is a democratic value in the person receiving support and aid initiatives having the opportunity to influence the content and design of these initiatives.

User involvement can be both an end and a means – but it needs to be clarified

User involvement can be viewed partly as a means of increased quality and efficiency in an operation, as an end in itself by democratising and increasing users’ independence, and partly as a contribution to giving users increased self-esteem and greater confidence in their own abilities. Another argument is that involvement reduces stigmatisation and provides an increased understanding of the needs and situation of different groups. There is thus a strong expectation that user involvement will contribute to increased quality in operations, redistribute power and give individuals control and influence over their lives. Jens Ineland believes that there is a distinct gap between the concept of user involvement and how this concept should be applied in practice:
“The normative charge of the term and the high degree of abstraction are both its strength and its weakness. A strength through its ability to gather and create unity between different actors and interests, a weakness because its normative and abstract nature offers limited guidance on how the actual concept of user involvement should be applied and implemented.” (p. 13) 

This field of research has grown significantly

The number of publications concerning research into user involvement increased significantly between 2010 and 2022. The level of research has increased primarily in Norway and Sweden. The dominant areas are social psychiatry and mental illness. The research methodology primarily takes the form of qualitative methods, and the effect and outcome are studied to a limited extent.

A diversity of methods

There are a large number of different methods and projects on user involvement. The most common are shared decision-making, co-production, peer support, experts by experience, user panels, user councils and user audits. The methods and focus of user involvement differ between the Nordic countries.

Different motives for increased user involvement

It is evident from research literature that there are several different motives, purposes and objectives for user involvement, and these are economic, social and political. The economic ones focus on efficiency, matching and savings, the social ones on recovery, empowerment and reduced stigma, while political motives focus above all on more general issues of representation and influence over planning and decisions.
In the knowledge compilation, Ineland shows that the motives for user involvement in Nordic research are dominated by operational activities (44%), followed by power aspects (38%) and democratic aspects (18%). Democratic goals thus dominate political motives and objectives for increased user involvement, but constitute a limited part of research, which is dominated by operational aspects.

From grass-roots demands to political goals

User involvement has historically been something that has been driven from below - by individual users and by civil society. The issue is now increasingly being raised by political leaders and various public welfare organisations. This development has been driven by an increased emphasis on governance philosophies in the public sector such as New Public Management, in which user involvement becomes, among other things, a means of increasing efficiency.
The results in the knowledge compilation also show that work on user involvement has increasingly been individualised, and that the trend has shifted towards methods in which the focus is on individual users’ own experiences, such as peer support and experience and attitude ambassadors, and to a lesser extent on methods based on user involvement at the systemic level - where users are represented by various organisations.

Knowledge gaps and suggestions

Jens Ineland presents similarities, but also differences between the Nordic countries. Extensive work is being undertaken to develop models and strategies for user involvement. The differences are primarily about which methods are dominant in each country and how the issue has been prioritised in the form of investments in programmes and other initiatives to develop user involvement for different groups.
The analysis of the effects of user involvement indicates three overarching categories: direct, indirect and unclear effects. Direct effects refer to studies of specific methods or strategies for user involvement that can demonstrate direct effects of the method studied. Indirect effects refer to studies where the result of involvement and participation either is or is perceived to be significant for the development of a specific method or strategy. Unclear effects consist primarily of studies that describe different experiences and perceptions of user involvement, where these are either perceived to be or are significant for the development of individuals, the method or the field in more general terms. Put briefly, the report shows that 71% of the studies analysed indicated direct or indirect effects of user participation, while 29% of the studies indicated unclear effects.

Knowledge gaps and future development areas

The report shows clearly that user involvement is difficult to demarcate and operationalise. Partly against this background, Ineland formulates a number of knowledge gaps and development areas for continued work on enhanced user involvement in the Nordic region.
  • Clarify the goals of user involvement: The results of the survey show that the motives can vary between, for example, democracy, power and operational aspects, with the first indicating that user involvement is an end in itself and the others that it can also be a means to achieve other goals. Clarity needs to be created to underpin the implementation of user involvement in practice and to identify ways of assessing and evaluating such initiatives.
  • The forms of user involvement need to be developed: User representation of organisations is a central part of the Nordic welfare model, which is based on consensus and consultation between the welfare state and the organisations as the citizens’ representatives. At the same time, there is a risk of stagnation in the forms of work, and they need to be developed in order that user involvement does not become a symbolic act. Another risk identified is that user organisations adapt to the goals and mindsets of welfare organisations, and thus risk losing their critical voice. The conditions for the organisations and the opportunities to recruit new members are also affected by the fact that the individual’s involvement takes place nowadays in digital forums. This raises an urgent question: how digital technologies can use users’ experiences to broaden representation at the systemic level.
  • User involvement for real change: Research shows that public welfare organisations face major challenges in the implementation of user involvement and co-production. This may be due to a lack of motivation from staff groups and that organisations are under pressure in terms of resources and time. Since investments in user involvement are based on the economic, legal and social conditions that exist, it is extremely important that such initiatives are supported by senior management. There is also a need for more knowledge about in what way and how user involvement can change the work methods of welfare organisations in the long term, and not just stop at a short-term, time-limited project.
  • More knowledge is needed of negative consequences: It is increasingly common for users’ own experiences to be actively utilised in various roles in support and aid initiatives, for example as experts in experience. There are, however, ethical challenges linked to the risk of negative individual consequences of involving people with increased vulnerability, such as mental illness and substance abuse. Research into negative consequences is limited, which makes this an important development area for identifying effective forms of activity.
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