Delivering experiential knowledge: repertoires of contention among Swedish mental health service user organisations

ABSTRACT

The aim of this article is to map the field of Swedish mental health service user organisations (MHSUOs) with a focus on organisational characteristics, positions and relationships. This mapping enables us to discuss these organisations’ repertoires of contention and their connections to governmental actors. Annual reports, organisational by-laws, and financial reports were collected for each of the 12 MHSUOs and the two network organisations that were included in the study. The empirical material was analysed according to the organisations’ size, activities, target groups, relationships and main knowledge base. Developments towards professionalization and hybridisation are evident within the field, and repertoires of contention are focused on advocacy and educational activities, with organisations providing experiential knowledge as a service to external actors. We further discuss how close ties to governmental actors and a consensus-oriented approach is related to risks of failure in recognising the conflicts that social mobilisation presupposes. It is crucial to strengthen MHSUOs independence, financial and otherwise, in order for these organisations to remain responsive to demands from the collective of service users.

Abbreviations: Mental Health Service User Organisation (MHSUO)

KEYWORDS:

• Mental health
• service user organisation
• hybridisation
• experiential knowledge

Introduction

Mental health service user organisations (MHSUOs) are non-profit organisations where the financial and administrative control resides with members that are predominantly service users or – occasionally – their relatives. These organisations vary with regard to organisational characteristics, but many of them are engaged in advocacy and provide member support through social activities or self-help groups. MHSUOs are today central actors both for developing the quality of and democratizing welfare services and supports. They operate in the interface of voluntary and professional social work, based on volunteer engagements but with professional claims (Meeuwisse and Sunesson 1998). This study offers both an empirical and a conceptual contribution by mapping the current state of MHSUOs in Sweden. Drawing from internal organisational documents, this article examines the organisational characteristics, positions, and relationships of Swedish MHSUOs. These different dimensions are explored building from Zald and McCarthy’s (1994b) discussion of mobilisation of resources within fields of social movement organisations, but also from the concept ‘repertoires of contention’(Tilly 1993), that describe social movement actors’ protest methods and actions. Prior studies have mapped the research literature on MHSUOs (Näslund, Markström, and Sjöström 2017) and have looked at MHSUOs in other national contexts such as the USA (Tanenbaum 2012; Goldstrom et al. 2006) and the UK (Crossley 2006). Through its focus on MHSUOs operating in the Swedish welfare context, this study contributes to furthering the understanding of the organisations’ relationships with governmental actors as well as the internal dynamics within the field.

Developments of service user movements

The first expressions of service user mobilisation consisted of informal peer-support networks, and these mainly focused on providing individual support rather than engaging in political contextualisation of the service user experience (Brown et al. 2008). From the 1960s onwards, service user movements that focused on civil rights and political advocacy emerged throughout the Western world (Tomes 2006; Brown et al. 2008; Crossley 2006). These movements formulated a radical opposition to psychiatry, partly directed at what was viewed as the oppressive environment of the mental hospital, but also the prevailing scientific foundations for psychiatric services and for concepts of psychiatric disease. In the 1980s, many organisations active in these movements shifted their focus towards a more collaborative approach to mental health service systems. During the last few decades, a significant growth in family organisations has been visible, often marked by closer collaboration with mental health services and in some instances also the private sector (Tomes 2006; Crossley 2006).

The establishment of MHSUOs in Sweden was formed within a domestic tradition of popular mass movements (Markström and Karlsson 2013). The Swedish National Association for Social and Mental Health (RSMH), founded in 1967, was for many years the dominant MHSUO in Sweden. Throughout its development, RSMH has combined political campaigns with support to members, and since the 1990s it has played an active role in government commissions of inquiry and national projects within the mental health field (Markström and Karlsson 2013). During the past few decades, Swedish MHSUOs have become more diversified, which is in line with international developments. New organisations have been established, often attending to specific psychiatric diagnoses (Markström and Karlsson 2013). In 2007, National Partnership for Mental Health (NSPH) was established to create a network for the increasing number of service user and family organisations (Nordén 2008; SOU 2006, 100).

The Scandinavian welfare model is characterised by a strong public sector, and Swedish MHSUOs have therefore been viewed as a minor supplement to public sector services. However, the introduction of market systems in Sweden has contributed to a move towards welfare pluralism with an increase of private and third-sector involvement in service provision (Markström and Karlsson 2013; Wijkström and Zimmer 2011). Practices central to service user movements such as experiential knowledge, recovery, and service user influence have furthermore been increasingly integrated into the Swedish mental health service system (Markström and Lindqvist 2015; Eriksson 2016; Karlsson 2011). This has made relationships between MHSUOs and public sector actors increasingly complex, where organisations can simultaneously assume the role of partners with, and opponents to, the mental health service system (Näslund, Markström, and Sjöström 2017). In light of the diversification of Swedish MHSUOs, as well as substantial changes to the mental health service system, it seems pertinent to examine the current state of the organisational field. Our aim is to map the field of MHSUOs according to organisational characteristics, positions and relationships. This mapping enables us to discuss these organisations’ repertoires of contention and their connections to governmental actors.

Theoretical framework

In analysing organisational characteristics, positions and relationships of Swedish MHSUOs, our point of departure is Zald and McCarthy’s (1994b) conceptualisation of fields of social movement organisations (SMOs). Zald and McCarthy (1994b) define social movements as a flux of collective beliefs in some part of society, conveying a demand for social change or opposing change. Specifically, they focus on SMOs, arguing that these organisations are needed in order to transform demands into organised action. A multitude of SMOs has formed as a result of social movement demands, and the interaction and competition between these organisations for legitimacy, resources, and support is central to Zald and McCarthy’s theory (Crossley 2006; Zald and McCarthy 1994a). In accordance with Crossley (2006), we do not view maximising resources as the main motivational source for SMO action. Resources are, however, central to organisational development and survival and are therefore important for our analysis. Field analysis further enables the examination of how conflict and competition forms a field, but also of how it is shaped by cooperative relationships between different actors (Brown et al. 2010; Zald and McCarthy 1994a).

McCarthy and Zald (1977) emphasise the mobilisation of resources within SMOs, the dependencies on support from external actors, and the attempts from authorities to regulate and incorporate these organisations. Through this, they especially focus on the ability of organisations to gain the power and resources needed in order to attain their goals (Zald and McCarthy 1994b). The resources that organisations compete for can consist of symbolic support, in the form of recognition from adherents, as well as financial or other forms of material support from constituents and funders. The interaction between SMOs and their environment is shaped by supply and demand, where external actors have demands for particular expressions. By convincingly communicating problems and solutions to external actors, organisations can also create demand. SMOs that survive and thrive in this competition thus demonstrate that their target and activities align with the interests of their constituents (McCarthy and Zald 1977; Crossley 2006). As the field develops and diversifies, the organisations that are most successful in meeting demands in areas that are connected to resource flows are the most likely to prosper (Crossley 2006; Zald and McCarthy 1994b).

Repertoires of contention

Social and political contexts provide an infrastructure for SMO activity where, for instance, access to institutional spaces are important in defining organisational tactics (McCarthy and Zald 1977). The political and institutional logics that underlie health care systems in a particular context are thus imperative in relation to the social movement activities that occur. Tilly (1993) contends that the ‘repertoires of contention’ of social movements are connected to the specific history of protest in a given environment. Repertoires of contention are the specific methods and actions that social movement actors engage in for their struggle. The selection of repertoire is to some extent shaped by surrounding institutions, available repertoires, and arenas. Success in delivering activities that answer to external demands is also connected to internal resources (Crossley 2002). The political position of SMOs further shapes their tactics, for example, with regards to radical versus reformist styles of protest (Crossley 2002). In this study we are concerned with the developments of Swedish MHSUOs in relation to organisational characteristics, positions and relationships. Accordingly, interaction and competition within the field, as well as the repertoire selection of organisations, is fundamental for this study.

Methods

In order to map organisational characteristics, positions and relationships of organisations within the field, we have collected internal documents from 12 Swedish MHSUOs represented at the national level and two national network organisations.

Data collection

Our selection of MHSUOs was based on the inclusion criteria: (1) a formal non-profit organisation, (2) represented at national level, (3) within the field of mental health, (4) with over 100 members, (5) explicitly targeting people with experience of mental health problems as members in by-laws. We have applied a broad definition of mental health, but have excluded organisations where people with dementia and intellectual disabilities constitute the main target groups. The limit of 100 members, that excludes micro-organisations with only a couple of members, was chosen to make the selection manageable. In our deliberations on how to delimit the field, our ambition was to include ‘we-for-us’ organisations run by, rather than for, service users (Meeuwisse and Sunesson 1998). So called ‘settlement’ or ‘we-for-them’ organisations (Meeuwisse and Sunesson 1998) such as Fountain House, initiated by professionals, while based on ideals of social change and emphasis on the importance of involving service users, were thus excluded. Key informants from MHSUOs and government authorities were conferred with when surveying the field.

In the end, a total of 12 organisations met the inclusion criteria (see Table 2 for information about their size and focus). Data were also collected from the national umbrella organisation NSPH and the organisation Hjärnkoll, which is run by the member organisations of NSPH. These network organisations, with organisations rather than individuals as members, are separately described in Table 1. Of the 12 included MHSUOs, eight were NSPH members, and one organisation (SHEDO) was an associated member. Four member organisations of NSPH were not included in the study because they did not explicitly target people with lived experience in their by-laws. Based on an initial pilot study, we designed a data matrix that guided further data collection and analysis. The 2015 annual reports, the organisational by-laws, and financial reports from each organisation were collected through contact via e-mail or phone. Complementary information was collected from The National Board of Health and Welfare. As public documents at the national level constitute the empirical foundation of the analysis, the organisations have not been anonymized. However, no information that can be connected to individual members was included in the presentation of the analysis. The study has been approved by the regional ethical review board in Umeå: 2016/121–31.

Table 1. Network organisations, with information about focus and organisational size

Organisation	Year established	Focus	Members	Local associations	Employees at central office/on national projects	Total income (Thousand Euros)
National Partnership for Mental Health (NSPH) Nationell samverkan för psykisk hälsa	2007	Umbrella organisation for Swedish MHSUOs	13 organisations	20 regional networks	9	810
Hjärnkoll	2015	Informational and attitude-changing activities run by the member organisations of NSPH	13 organisations	11 regional	10	1,076

Table 2. MHSUOs ordered by membership size, with information about focus and organisational size

Organisation	Year established	Focus	Members	Local associations	Employees at central office/on national projects	Total income (Thousand Euros)
The Autism and Asperger Association Autism- och Aspergerförbundet	1973	Autism-spectrum disorders	15,565	24 district, 3 local	10	1,383
National Association Attention Riksförbundet Attention	2000	Neuropsychiatric disabilities	15,553	57 (2 regional)	18	3,345
Swedish National Association for Social and Mental Health (RSMH) Riksförbundet för Social och Mental Hälsa	1967	Social and mental health problems	7,353	122	19	1,647
The National Schizophrenia Association Schizofreniförbundet	1987	Psychosis disorders	3,015	47	4	616
Healthy & Free Frisk & Fri	2003^2	Eating disorders	2,670	20	10	575
Swedish National OCD-Association Svenska OCD-förbundet	1989	OCD disorders	1,961	9 (2 regional)	4	481
Swedish National Association for Rights, Emancipation, Health and Equal Treatment (RFHL) Rättigheter, Frigörelse, Hälsa och Likabehandling	1965	Addiction, mental health problems, and social vulnerability	1,460	26	9	380
Anxiety Disorders Association of Sweden (SÅSS) Svenska Ångestsyndromsällskapet	1992	Anxiety disorders	884^3	12	2	107
National Association Balance Riksförbundet Balans	1997	Affective disorders	852	12	3	191
Tilia	2012	Mental health for youth 12–30 years old	400	4	1	77
Self Harm and Eating Disorders Organisation (SHEDO)	2008	Self-harm and eating disorders	230	24 local representatives	4	221
Organised Aspergers (OA) Organiserade Aspergare	2006	Asperger syndrome and high functioning autism	208	6 district	8	2

It should be noted that the included material is not a complete account of the activities that MHSUOs are involved in. Our data covers documents from 2015 and thus represent a limited period of time and only activities that the organisations have chosen to communicate to the public. Data concerning total income and number of employees should be interpreted with some caution since these numbers can fluctuate over time and in relation to externally funded projects. Additional methods of data collection could have further contributed to the empirical overview of the field. However, studying naturally occurring written documents does provide important insights into the activities, targets, and structures of third-sector organisations (Scaramuzzino 2012). The included documents account for current activities at the national level, but also more durable focus areas of organisations for instance in explicit goals.

Data analysis

The analysis oscillated between a deductive and inductive approach, where both the initial research questions and the available information informed the construction of the data matrix. The data matrix was divided into six main parts that respectively described the organisations’ size, activities, target group, explicit goals, relationships to other actors, and main knowledge base. These different dimensions match our ambition to map the field according to organisational characteristics, positions and relationships, and further lay the foundation for our discussion of repertoires of contention. The analysis of knowledge was more interpretive and proceeded from the basis of knowledge that the organisations’ activities rest upon. Directed content analysis (Hsieh and Shannon 2005) was applied to examine organisational documents in relation to the categories of experiential, professional, and research-based knowledge. These categories were derived from the three dimensions of evidence-based practice described by Thyer and Pignotti (2011). Triangulation, through discussion of the analysis in the research group, was used as a strategy to strengthen validity. Examples illustrating our analysis are presented in the results section. The size of the included organisations is reported in Table 1 (for the two national network organisations) and in Table 2 (for the 12 MHSUOs). Table 3–4 show aggregate information about organisational characteristics. All information in Table 3–4 is based on frequency counts. After this empirical overview, a theory-guided analysis is performed in the discussion section.

Table 3. Target group and explicit goals

			Number of organisations (N = 12)
Target group	People with lived experience		12
	Relatives		8
	Others		2
	By diagnostic group		9
	Other criteria		3
Explicit goals	Broader issues	Protection of social and civil rights	6
		Preventative interventions	3
		Adaptation of the labour market	2
		Adaptation of the school system	1
		Fair and secure social insurance	1
	Service issues	Quality of services	7
		Accessibility of services	3
	Member support	Provide support to service users	7
		Provide support to relatives	5
		Provide social contact for members	2
	Knowledge	Spread knowledge to the public	8
		Increase research and knowledge	3
	Participatory relationships	Service user involvement and participation	6
		Networks for organisations	4
		Cooperation with authorities	2

Table 4. Organisational activities

Activities			Number of organisations (N = 12)
Education activities	Internal education activities	Lectures with members as the audience	7
		Education programs for members	7
		Study circles	2
	External education activities	Workshops/seminars/conferences/lectures	11
		Production of educational material	10
		Information campaigns	8
		External education programs	8
		Research collaborations	5
		Surveys/data collection	4
		Tutoring assignments	2
Social activities		Member camps	5
		Field trips	3
Self-help/Peer support		Online support (chat/forum)	6
		Telephone support	4
		Individual support/self-help groups	2
Advocacy activities	Popular	Taking part in public debate	9
		Rights protection/individual advocacy	4
		Participation in/organising goal-oriented events	3
		Reoccurring and goal-oriented campaigns	2
	Invited	Service-user involvement in relation to government departments and public authorities	11
		Statements of opinion, petitions	6

Results

In this section, we report the size and focus of the two network organisations (Table 1) and the 12 MHSUOs (Table 2). Following this, the target group, explicit goals, activities, relationships and knowledge base of the 12 MHSUOs are described, enabling our analysis of organisational characteristics, positions and relationships within the field.

NSPH, initially a network later reformed into a national umbrella organisation, was founded in 2007 to create a platform for increased cooperation between service user groups. Service user organisations had been discussing the need for a shared forum to strengthen their joint influence. The establishment of NSPH was also a response to external demands from the government’s coordinator for psychiatry who requested a collaboration partner that represented the breadth of service user groups (Nordén 2008; SOU 2006, 100). Accordingly, NSPH is funded by government grants. Of the 12 organisations in our study, The Autism and Asperger Association, OA and the most recently established MHSUO, Tilia, are the only ones that are not members of NSPH. Swedish MHSUOs thus have a well-established arena for inter-organisational collaboration. As of 2015, NSPH had established 20 regional networks, see Table 1. Its main repertoire of contention regards advocacy, with a shared advocacy program formulated by the member organisations.

Hjärnkoll was originally a project aiming to change public attitudes towards mental health, inspired by the British campaign Time to Change, and run by the Swedish Agency for Participation in cooperation with NSPH (Andersson 2014). The name ‘Hjärnkoll’ is a wordplay with the twofold meaning of ‘brain-understanding’ and ‘complete understanding’. In 2015, the project was reformed into an association run by the member organisations of NSPH, but it is still mainly financed by the government. The main focus of Hjärnkoll is anti-stigma educational activities and media campaigns fronted by people with experience of mental ill-health sharing their individual narratives (Andersson 2014).

Since the 1960s, Swedish MHSUOs have grown in numbers while also diversifying towards diagnosis-specific organisations. As Table 2 shows, The Autism and Asperger Association and The National Association Attention are the two organisations that have been the most successful in attracting constituents, both having around 15,500 members. These organisations focus on neuropsychiatric disabilities, are to a great extent dominated by parents and relatives and have outgrown RSMH, the historically largest MHSUO in Sweden. Five organisations have fewer than 1,000 members. The field is thus divided with regard to membership size, with three large and five relatively small organisations. With 122 local associations, RSMH has the most widespread local presence, whereas some organisations, such as Tilia, mainly focus on activities at the national level.

Table 2 further illustrates that The National Association Attention has the largest total income (3,345,000 EUR) followed by RSMH (1,647,000 EUR) and The Autism and Asperger Association (1,383,000 EUR). The financial reports reflect strong dependency on the government, where public grants constitute the main source of funding for all MHSUOs except Tilia and OA. Publicly funded projects further constitute a major source of income for MHSUOs and represent one important way that demand from external actors can shape organisational focus and activities. In aggregate,¹ public grants constitute 48% of the organisations’ total income while 26% emerges from publicly funded projects. Additional sources of income are sales of products and services (14%), membership fees (5%), donations (4%), and sponsorships (2%). The strong financial dependence of the public sector that characterise Swedish service user organisations in the wider disability field (Myndigheten för vårdanalys 2015) is even more pronounced for organisations in the mental health area.

Target group and explicit goals

As illustrated by Table 3, all organisations explicitly target service users as members, but few organisations within the field are service-user exclusive. OA is the only organisation where voting membership is only available for people with lived experience. Many MHSUOs target relatives as members (n = 8), and The National Schizophrenia Association and National Association Attention also include professionals in their target group. Nine of the included organisations are diagnosis specific (see Table 2) and these organisations have grown in numbers since the 1980s. Only three organisations deviate from this pattern and have broader definitions of their target group. These are the earliest established MHSUOs – RSMH and RFHL – as well as Tilia, an organisation founded in 2012 that is focused on mental health for youth.

The analysis of explicit goals proceeds from purpose statements in the organisations’ by-laws. Many organisations include aims and objectives that are ‘psychiatry-specific’ and are focused on improving the quality of (n = 7) or access to (n = 3) mental health services and supports (see Table 3). Several organisations state goals to provide internal support to members, including both service users (n = 7) and relatives (n = 5). Among objectives that are focused on broader social issues, the most common aim is to reduce stigma and increase public knowledge of mental health (n = 8). Furthermore, six organisations describe the target of protecting and strengthening the social and civil rights of service users. A reformist style of contestation further characterises the field, where many organisations state aims to develop relationships to governmental actors.

Activities

The stated target of many MHSUOs, to spread knowledge to the public, is also reflected in their reported activities, see Table 4 for an overview. Repertoires of contention focused on knowledge production and dissemination is an increasingly strong focus within the field. For example, all the three largest MHSUOs have founded educational companies. Many organisations have developed or participate in educational programs for members, employers, and mental health professionals. In partnership with NSPH, RSMH runs a project focused on educating people with service user experience to perform user-focused monitoring. Some organisations are involved in activities relating to data collection, both independently (n = 4) and in collaboration with researchers (n = 5). The National Association Attention report several such activities, including a survey focused on working-life experiences of people with ADHD.

In Sweden, public service user involvement has long been a core activity in psychiatric contention, and is also the most commonly reported activity. Table 4 illustrates that 11 MHSUOs are involved in participatory activities in relation to government departments or projects within the mental health area. Taking part in public debate (n = 9) is the most common form of advocacy not connected to public sector actors and is often enacted through opinion pieces in traditional media outlets. Mainly the smaller organisations select repertoires that involve member support at the national level. Larger organisations have a more distinct division of labour, where local branches have a stronger emphasis on member support. Similarly, Markström and Karlsson (2013) found a strong focus on social activities and peer-oriented activities in the local associations of RSMH.

Relationships to other actors

The majority of Swedish MHSUOs have developed relationships to other actors both within and beyond the field. All collaborate with public sector actors, for instance, by participating in reference groups with government agencies. Being a collaboration partner in publicly run projects, as SHEDO contributing to a national project focused on self-harm, also exemplifies such relationships. As touched on previously, NSPH is a primary forum for cooperative relationships within the field. In fact, inter-organisational cooperation not channelled through NSPH is seldom described in the annual reports. All 12 organisations have, however, developed relationships with third-sector organisations that are not specifically operating in the mental health field. Several organisations are members of The Swedish Disability Rights Federation, which mobilises organisations in the wider disability field. Most organisations have collaborative relationships with one or several adult educational associations (n = 10), reflecting the central importance of popular education in the history of protest and popular mobilisation in Sweden.

Seven organisations mention collaboration with actors in the private sector. The National Association Attention and Tilia are examples of MHSUOs that collaborate with large corporations such as banks and insurance companies, but also private actors in the mental health area such as welfare service-providing companies. Some organisations have connections to the pharmaceutical industry. The National Schizophrenia Association has for instance reported considering the possibility of initiating financial and advocacy-related cooperation with pharmaceutical companies.

Knowledge base

With regard to the basis of knowledge that activities are described to rest upon, all MHSUOs in some way draw upon experiential knowledge. RSMH for instance present how their organisation ‘creates unique knowledge based on the members’ experiences of how society and the service system work for people with mental ill-health’. Experiential knowledge is apparent in relation to peer support within organisations, but also as a perspective that is provided to other actors through public service user involvement and through activities related to education. Developments towards incorporating professional perspectives are, however, also visible within the field. Five organisations are deemed to have integrated professional knowledge as a foundation for their activities. For example, The National Association Attention has formed a knowledge council made up of mental health professionals aimed at providing the organisation with professional expertise. Seven organisations also base their activities on research-based knowledge, for instance, by advocating for the implementation of evidence-based methods. The educational company of RSMH aims to provide ‘experience-based education, in our area of competence that combines service user knowledge with current research’. In accordance with this, many organisations present and apply expert and experiential perspectives as complementary rather than in conflict with each other.

Discussion

Our analysis of organisational characteristics, positions and relationships of Swedish MHSUOs shows that the field has become increasingly diversified. New organisations have arisen, many of them diagnosis specific, contributing to a growth of organisational actors. However, the field also displays tendencies of increased coherence. Almost all MHSUOs active at the national level collaborate through NSPH, and their repertoires of contention have shifted focus towards activities related to education and knowledge dissemination. Furthermore, our analysis of organisational documents illustrates strong dependency on, and collaboration with, public authorities. In the following section, these developments and dynamics within the field will be further explored with a specific focus on these organisations’ repertoires of contention and relationships to governmental actors.

A stronger voice or a diluted agenda?

NSPH creates structures and arenas for inter-organisational communication and cooperation within the field. By supporting interactions among almost all MHSUOs active at the national level, and by constituting a unified voice for these organisations in relation to government authorities, NSPH has central significance for the dynamics within the field. As the field diversifies, such spaces for collaboration become increasingly important. Coalitions of MHSUOs make it possible for the organisations to coordinate activities while retaining separate organisational identities (Zald and Garner 1994). NSPH was, however, originally established as a response to demands from government authorities and is financed by public grants. In light of the strong ties between the government and NSPH, its independence and ability to take positions opposing government views requires closer inspection (cf. Van de Bovenkamp and Trappenburg 2011).

Crossley (2002) and Rissmiller and Rissmiller (2006) describe the diversified repertoires of contention of service user movements in the UK and the USA, where some groups pursue their objectives through institutional politics, whereas others assume an autonomous and oppositional stance. Rather than the latter type of radical position, the repertoire selection of NSPH and Swedish MHSUOs is focused on participation in spaces connected to government authorities. This could potentially deprive organisations of resources and ability to engage in non-institutional politics outside of bureaucratic structures. It could further risk diluting the critical edge of the service user movement, through limiting the ability to function as a protest movement and constitute a counterpart to government authorities (cf. Näslund, Markström, and Sjöström 2017; Eriksson 2018; Böhm, Dinerstein, and Spicer 2010).

Resource flows influencing repertoires of contention

Even though voluntary engagements remain the basis of Swedish MHSUOs, they are marked by processes of professionalization and hybridisation. The organisations have employed staff, some have incorporated professional knowledge and established educational companies. Their repertoires of contention tend to combine advocacy with knowledge production and dissemination. A similar shift from grassroots to more formal and professional formats has also been described in other national contexts (Brown et al. 2007; Salem, Reischl, and Randall 2010, 2008; Ostrow and Adams 2012). Internationally, professionalization and hybridisation processes have been connected to the development of ‘social movement service organisations’ that combine provision of care and support alternatives with advocacy (Meyer 2010). We argue that the specificities of the Swedish welfare context, where the public sector remains the dominating provider of mental health services, explains why these developmental processes take other paths. Public sector demands are thus directed at MHSUOs supplying experiential knowledge rather than care and support alternatives. The emphasis on knowledge dissemination can also be connected to the historical importance of popular education for popular mass movements in Sweden (Laginder, Nordvall, and Crowther 2013). This pattern highlights the significance of institutional environments, external demands and the history of protest for the repertoire selection of MHSUOs (cf. ; McCarthy and Zald 1977; Tilly 1993).

Experiential knowledge constitutes a unique internal resource for MHSUOs, and such knowledge has become higher valued in mental health service systems (Restall, Cooper, and Kaufert 2011; Noorani 2013). This contributes to demands from surrounding institutions for the provision of experiential knowledge as an educational service or in order to legitimise policy-making processes. According to Zald and McCarthy (1994b), responding to these external demands generates resources. Consequently, and as our analysis of organisational documents illustrates, the three largest MHSUOs have formed educational companies and the recently established organisation Hjärnkoll focus especially on providing experiential knowledge to external actors. This revalorization of experiential knowledge supports the inclusion of the voices of people with lived experience, where the end-users of services are involved in shaping policy and services. Public demand for experiential knowledge does, however, risk shifting the efforts of MHSUOs from formulating service user groups demands for change, towards providing services based on their experiential expertise (Meeuwisse and Sunesson 1998).

Experiential knowledge is in many Swedish MHSUOs combined with professional and research-based perspectives, where the higher status of expert knowledge in the professional field provides additional sources of organisational legitimacy. Historically, service user movements have attempted to bring about change by challenging the hegemonic models of mental health services (Tomes 2006). Currently, most MHSUOs within the field instead present these different perspectives on knowledge as complementary. Health services should according to The National Board of Health and Welfare incorporate knowledge from research, professional expertise and the experiences of the patient/user in evidence-based practice. Hence, developments towards combining different basis of knowledge do not only represent a move on the part of MHSUOs but also of actors representing the mental health service system. A paradox is, however, embedded in MHSUOs requiring the financial support and legitimacy from the same system they could potentially be contesting (Archibald 2010). Organisations tend to move towards imitation of hegemonic institutions in order to be defined as legitimate actors (Meyer and Rowan 1977), which risks limiting MHSUOs’ ability to act as a counterweight to government authorities and to maintain their autonomy in how they address mental health issues.

Conclusion

Developments of the Swedish mental health service system, including the growth of community psychiatric services and the increased integration of service user involvement, has brought changes in the approaches of MHSUOs. These organisations mainly assume a consensus-oriented approach in relation to the mental health service system. This pattern, also visible in other national contexts (Karlsson and Markström 2012), is reflected in how MHSUOs cooperate with service providers, their dependency on government funding, and in how they increasingly embrace professional perspectives on mental health. To some extent, this development is mirrored by changed positions on part of authorities and service providers. However, autonomy requires a certain degree of distance. Close financial and cooperative ties between MHSUOs and public sector actors, where few organisations assume a radical contentious repertoire, could result in failure to recognise the conflicts that social mobilisation presupposes (cf. Hultqvist and Salonen 2014).

Our attention to organisational characteristics, positions and relationships of MHSUOs, through the lens of these organisations contentious repertoires and resource mobilisation, contributes with insights into how demands from institutional environments are significant for organisational development within the field. At its core, this study illustrates close financial and cooperative ties to the government and a development towards providing experiential knowledge as a ‘service’ to external actors. As a practical implication, our study highlights the importance of developing models that strengthen financial independence for MHSUOs. Increasing general public grants for these organisations could contribute to greater autonomy, by making the organisations less dependent on receiving grants for publicly funded projects. This could further decrease organisational pressure to conform their repertoires to demands from authorities. In the light of the increasing difficulties of third sector organisations to mobilise members, it is essential for MHSUOs to be able to remain responsive to demands from the collective of service users.

Disclosure statement

The authors declare that they have no conflict of interest.

Additional information

Funding

This work was supported by the Swedish Research Council for Health, Working Life and Welfare under Grant [number 2015-00414].

Notes

1. Based on the seven MHSUOs that provided a full account of their sources of income.

2. Local association established in 1983.

3. Information from 2016–12-31.