Service-user participation in coordinated planning, from the perspective of involved professionals

Abstract

This paper uses a neo-institutional perspective to examine possibilities and obstacles for participation in coordinated individual planning (CIP) for people with intellectual disabilities. CIP is a tool for interprofessional and interorganizational coordination with the objective of creating a joint plan for a person needing cohesive care. Participation by the service-user is considered important for effective coordination but involving someone with an intellectual disability may require special adaptations. A thematic analysis of interviews with 17 professionals from different organizations in Sweden reveals that service user participation is considered an important goal by professionals, but also that it is difficult to put into practice. The results indicate that CIP is characterized by tensions and policy-practice decoupling that limit the service-users’ possibilities for participation.

Points of interest

• Different organisations and professionals sometimes give support to one individual. They need to coordinate this support.

• It is necessary for service-users to be involved in coordinated planning of the support and care they need.

• The study analyses how professionals experience participation in coordinated planning when the service-user has an intellectual disability.

• The study found that coordinated planning can be difficult to adapt for service-user participation.

• The study found a gap between ideals and practice caused by the organizations’ rules, norms, and structures.

• The findings reveal a risk of focusing on changing the service-user’s behaviour or situation rather than addressing problems within the organizations.

Keywords:

• Participation
• coordination
• individual planning
• interprofessional
• interorganizational
• intellectual disability
• Sweden

Introduction

To realize the overall policy intentions regarding people’s right to participate in society on equal terms (SFS1993:387; United Nations 2006), the welfare sector needs strategies for ensuring that people with disabilities are included in the planning of the support, service, and care that they receive. This is especially important in planning that concerns everyday life and the support needed to be able to live in accordance with one’s own values and preferences. Increasing specialization and fragmentation of the welfare system means that planning of support, service, and care can take place in a context that includes multiple actors, which has made coordination a key issue in the public sector (Eriksson et al. 2020; Lægreid et al. 2015; Pedersen 2020). This paper examines how the goal of facilitating participation by people with intellectual disability is handled by professionals in a practice called coordinated individual planning (CIP). This is a tool for coordinating between different actors to formulate a joint plan when a person needs support from different organizations and professions.

The involvement of service-users is not only important for achieving overall goals of participation. Involvement in planning the support to be provided has also been shown to be a prerequisite for participation (Umb Carlsson, 2021), which in turn has been shown to be a key factor for coordination (Beck, Rasmussen, and Nielsen 2021; Eriksson et al. 2020). Service-user participation is therefore emphasized in policies about coordinated planning in Sweden (SFS1993:387; SFS2001:453; SFS2017:30). This has led to actors in the coordinated planning needing to work to involve the persons concerned. If the service-user has an intellectual disability, special measures may be needed due to the person’s impaired ability to understand new and complex information and to communicate needs and wishes (Browning, Bigby, and Douglas 2021; Kinnear et al. 2018). Participation is also a key focus of research and practice in the disability field (Dean et al. 2016), but participation in CIP by people with intellectual disability is a relatively unexplored area. Previous research indicates a general lack of knowledge of possibilities and obstacles for participation in individual planning for this group (Ahlström et al. 2021; Doody, Lyons, and Ryan 2019). However, such knowledge is needed to achieve the stated ambitions for participation. Because people with intellectual disabilities often depend on support from several different organizations, it is valuable to include experiences from different perspectives. The perspectives of professionals who interpret the policy and put it into practice can contribute important knowledge about opportunities and obstacles for participation in CIP by people with intellectual disabilities. It is they who invite other professionals to CIP meetings, and they have great influence over how such meetings are designed and what the process looks like. This is important because their actions and their ideas about whether and how people with intellectual disabilities should take part in CIP can enable or hinder the participation of people with intellectual disabilities.

This paper will address the question of participation by people with intellectual disabilities in interprofessional and interorganizational coordination of support and care from a neo-institutional perspective. The research questions are: 1. How can participation in CIP by people with intellectual disabilities be understood from the perspective of professionals? 2. How can a neo-institutional theoretical lens illuminate possibilities as well as obstacles to participation in CIP for people with intellectual disability?

Background

In Sweden, 21 regional authorities (hereafter regions) are responsible for specialized healthcare and most of primary care, while 290 municipalities are responsible for social services and social care. People with intellectual disability often need continuous support from both organizations (Ahlström et al. 2021; Kinnear et al. 2018). Contact with regions is based on individual medical needs or specialized needs concerning the disability. The municipality provides support with housing, employment and leisure activities based on needs assessments. Many people may be involved in the overall support, including different kinds of professionals from different organizations and trustees/relatives. The policy regarding coordination is expressed in different Swedish legislations. Since 2010 there is a special section of the Health and Medical Care Act (SFS2017:30) and in the Social Services Act (SFS2001:453) requiring that CIP is offered to everyone who needs coordination of services provided by the regions and municipalities. The Act on Support and Service for People with Certain Functional Impairments (SFS1993:387) also gives people with certain disabilities the right to an individual plan for cohesive support. The service-user’s participation, consent and influence in the planning process are described as central to the Swedish policy on CIP.

CIP can be defined as interprofessional coordination, i.e. a looser form of interprofessional work where discussion and communication occur less regularly, and integration and interdependence are less important than in interprofessional collaboration (Xyrichis, Reeves, and Zwarenstein 2018). However, since CIP requires professionals from different organizations, it involves not only interprofessional work but also interorganizational work, which creates additional challenges (Auschra 2018; Karam et al. 2018; Beck, Rasmussen, and Nielsen 2021; Biringer et al. 2020; Schultz, Brostrøm Kousgaard, and Davidsen 2021). Previous studies have shown that well-functioning interorganizational coordination is based on shared responsibility with common goals (Auschra 2018; Beck, Rasmussen, and Nielsen 2021; Biringer et al. 2020), good relations between coordinating parties (Auschra 2018; Beck, Rasmussen, and Nielsen 2021; Schultz, Brostrøm Kousgaard, and Davidsen 2021), collaboration above and beyond the individual coordination (Biringer et al. 2020), and a functioning exchange of information (Auschra 2018; Biringer et al. 2020).

Previous studies of CIP in a Swedish context have described coordination for children (Hedberg et al. 2018), older adults (Jobe, Engström, and Lindberg 2019), people with addiction (Källmén, Hed, and Elgán 2017), and people with psychiatric disabilities (Jones, Knutsson, and Schön 2021b; Knutsson and Schön 2020; Matscheck et al. 2019). Ahlström et al. (2021) have found that frail elderly people with intellectual disability and their relatives participated in CIP in only half of the plans studied. Half of the plans studied were drawn up entirely by professionals. These studies, as well as studies from other countries, have shown that the context of collaboration affects the planning, coordination, and participation. Some indicate that CIP is not carried out to the extent needed (Källmén, Hed, and Elgán 2017; Matscheck et al. 2019) or as intended (Beck, Rasmussen, and Nielsen 2021; Breimo 2016), and that there seems to be uncertainty as to why CIP is carried out (Matscheck et al. 2019). Several studies highlight the importance of the service-user’s participation, e.g. that the person wants to be involved in decision-making processes (Jobe, Engström, and Lindberg 2019), that the service-user’s involvement is a prerequisite for an effective plan (Beck, Rasmussen, and Nielsen 2021), and that the service-user is seen as a carrier of knowledge (Knutsson and Schön 2020). The results point to several challenges linked to service-users participation, including that they do not participate to the extent that can be expected (Ahlström et al. 2021), that their participation is limited by professionals’ actions (Hedberg et al. 2018), and that the CIP documentation lacks genuine user involvement (Matscheck, Ljungberg, and Topor 2020). None of the studies found on CIP have an explicit focus on participation by adults with intellectual disability and how the way that professionals work in an interprofessional and interorganizational context affects participation by this group.

Theoretical framework

Together with other concepts such as empowerment, social inclusion, and active citizenship, participation has become a core value and goal in the welfare state (Eide, Josephsson, and Vik 2017). The right to participate in society on equal terms is a central part of governing documents at national and international level (SFS1993:387; United Nations 2006). According to Eide, Josephsson, and Vik (2017), there is ‘no consensus on how to understand participation conceptually or how to work with participation as a central value or principle in professional practice and service delivery’ (p.6). Even within the field of disability research, the concept is used in different ways and with different meanings, making it difficult to define in a clear way (Dean et al. 2016; Molin 2020). Participation can, however, be understood in relation to other concepts, either different forms of participation or components of participation, e.g. activity, involvement, belonging and power (Molin 2020). It can also be understood in relation to person-centred concepts (McCausland et al. 2022; Waters and Buchanan 2017), which are central principles in social work and health care. Previous research points to the importance of the person being an active party in planning, and the service-user’s perspective being included in decision-making (Knutsson and Schön 2020; McCausland et al. 2022), because all individuals are different, and therefore they have different perceptions of how they want to be involved (Jones, Jess, and Schön 2021a; Kvarnström et al. 2012). Those who receive support due to intellectual disability are often highly dependent on people who know them, e.g. families or professionals (McCausland et al. 2022). They may need support to understand and explain their own needs and make decisions that concern themselves, the support offered, and life-determining choices (Browning, Bigby, and Douglas 2021). Even if participation is central to the Swedish policy on CIP, no clear definition is given in the governing documents. The professionals who are to put the policy into practice therefore need to interpret and give meaning to the concept themselves.

Because coordination involves professionals from different organizations with different rules, norms, and structures, planning also means handling different ways of understanding and giving concepts meaning. Based on O’leary and Boland’s (2020) discussion of theories that consider this complexity in interprofessional research, a neo-institutional perspective has been chosen for this study. In sociologically oriented neo-institutionalism, rules, norms and structures are seen as culturally constructed by the actors within the organization, but also by the context within which the organization exists (Powell and DiMaggio 1991). So-called rationalized myths, social rules related to systems of meaning and ideas of the best way to organize and carry out activities, greatly affect an organization’s formal structure and activities, no matter how effective or expedient they actually are (Powell and DiMaggio 1991; Scott and Meyer 1994). There is strong pressure on organizations in an organizational field, for example the welfare system, to adapt to these rationalized myths and incorporate them into policy. The policy that prevails within the organization therefore reflects normative ideas about how and for what purpose different activities should be performed (Miller and Paradis 2020; Powell and DiMaggio 1991; Scott and Meyer 1994). One way for an organization to deal with this institutional pressure is decoupling, which concerns how a gap between formal policy and actual practice is created and maintained (Paradis 2017). This is a consequence of avoiding internal conflicts while at the same time maintaining legitimacy. The professionals within the organizations are expected to turn the policy’s normative ideas into action, which means that their actions and patterns of behaviour can be understood as expressions of how they interpret the meaning, or value, of the rules (Scott and Meyer 1994). Due to its complexity, the welfare system is based on several different systems of meaning, which leads to multiple institutional logics, in the sense of ideals, values and meanings. These represent both conflicting and complementary ways of thinking and acting within an organization (Zilber 2017). The interprofessional and interorganizational context within which CIP policy shall be put into practice is therefore, from a neo-institutional perspective, valuable for understanding the professionals’ experiences of whether and in what ways it is possible for people with intellectual disabilities to participate in CIP.

Method

What is written in this paper is part of larger research project that aims to increase knowledge of participation for people with intellectual disabilities in CIP. In the project, the service-users’ participation will be examined from different perspectives, including their own experiences and thoughts. This paper examines possibilities and obstacles for service-user participation from the perspective of the professionals. A qualitative study design was chosen, since the study focuses on professionals’ understanding and experience and assumes that social context influences experiences and how these experiences are given meaning (Alvesson and Sköldberg 2018). In a forthcoming study, the service-users own experiences will be examined.

Data collection

As the research project aims to understand different experiences, the ambition has been to recruit participants from different organizations and different professions. Based on Braun and Clarke (2019b) discussion of saturation, the goal was to interview about 20 professionals. The recruitment started with information about the research project being sent out via contacts in regions and municipalities. The data for this study was collected through interviews with professionals who have experience of CIP for adults with intellectual disability. The inclusion criteria were that the professional works in an organization that provides support to adults (>18 years) with disability and has experience of CIP for people with intellectual disability. Using purposive and snowball sampling (Bryman 2016), 17 participants (15 women, 2 men) from different organizations and professions agreed to participate. Following professions are represented: social worker, nurse, physiotherapist, psychologist, assistant nurse, support worker, developer, and team leader.

The interviews were conducted by the first author between December 2019 and October 2020. Some were conducted physically at the person’s workplace (n = 7) and some via video meeting (n = 7). One interview was conducted in the form of a group interview (3 support workers). The interviews lasted between 30 and 60 min and were recorded and transcribed verbatim.

Data analysis

Thematic analysis based on Braun and Clarke (2006, 2019a) was used to identify, analyse, and interpret patterns within and across data in relation to the research questions. The analysis has been carried out by the first author. All stages in the analysis process were discussed regularly with other co-authors to ensure agreement on interpretations. An abductive approach has been used involving a back-and-forth movement between different steps of the analysis, rather than a linear process. The first step was to get acquainted with the data by transcribing the recorded interviews verbatim and reading the transcribed text several times. An analysis protocol was used throughout the analysis process to capture thoughts and ideas and contribute to reflexivity. After that, data was sorted in a systematic way by coding relevant parts across the entire dataset. Initial ideas generated from the reading were used to create and explore codes. These codes were then used to structure the data and generate themes that capture both semantic (surface, obvious, explicit) and latent (implicit, underlying) meanings (Braun and Clarke 2006). Possible themes were continuously checked against coded excerpts by going back and forth between excerpts from interviews, codes, and possible themes. Thematic maps were used to explore different themes in relation to each other and to the entire dataset. In the analysis process, all authors have used their competence in discussing codes, themes, interpretations, ideas, and thoughts generated during the work of the first author. All authors have many years of experience in the disability field, both as professionals and researchers.

Inspired by Miller and Paradis (2020) to seek to understand the professionals’ experiences and how they create meaning in a broader social context, we have used concepts from neo-institutional theory in the final stage of the analysis. By reading the theory in parallel with the thematic mapping, theoretical concepts have been used in the interpretation of the empirical material. Two concepts, Institutional logics and Decoupling were used to gain a deeper understanding of latent meanings in the material and to broaden the analysis to cover a wider context.

The analysis process resulted in two major themes that contribute answers to the research questions: A planning process full of tensions and Discrepancy between ideals and practice. To illustrate how the analysis was made we will give an example of how codes and subthemes at different levels contributed to shaping one of the major themes. The codes The purpose is cohesive care and The purpose is coordination together formed a subtheme at level 1 which was named The purpose of CIP is based on values associated with coordination. The codes The goal is change in the individual and Participation is needed to succeed in creating change in the individual together formed another subtheme at level 1 which was named The goals of CIP are based on values associated with participation. Together these two subthemes generated a level 2 subtheme named The purpose and goals of the planning rest on different value systems that together with another subtheme at level 2, Asymmetric power relations, formed the major theme A planning process full of tensions.

Ethical considerations

The study was approved by the Swedish Ethics Committee (no. 2019-02263). In accordance with the principles of research ethics (Swedish Research Council 2017) all participants have received both written and oral information about the study, its purpose and approach. All participants have given written consent, either before or in connection with the interview. These ethical considerations also guided how participants are represented to safeguard that their identity is not revealed. Therefore, only profession and organizational affiliation are supplied in connection with quotations in the findings section.

Findings

A strong pattern in the interviews is that professionals describe participation as self-evident, something that should permeate everything that is done. Participation is described in relations to social equality and good living conditions. From a neo-institutional perspective, this self-evident nature of participation can be understood as an institutional pressure on organizations and professionals to treat participation as a central value guiding their action, a so-called rationalized myth that is incorporated into the policy (Scott and Meyer 1994). Despite this, the empirically generated themes indicate that participation is challenging to put into practice, and that working with participation in CIP is affected by different boundaries. The findings section is divided into two major themes, the first highlighting how CIP is characterized by tensions that professionals need to manage, and the second demonstrating a gap between the professionals’ idealistic views about how to implement participation in CIP and the reality.

A planning process full of tensions

The first theme indicates that professionals interpret and understand the policy on CIP, with its emphasis on participation, in different ways. Two subthemes reveal semantic and latent tensions caused by different institutional logics and unequal power relations.

Purpose and goals rest on different value systems

The need for coordination is described in the interviews as mainly arising from problems in the welfare system and the organizations; these problems take the form of an inability to coordinate and communicate, or deficiencies in the existing network of contacts. A social worker from the region states that ‘The way society is constructed, it’s difficult to get that contact without everyone sitting together and getting the consent at the same time’, while a psychologist, also from the region, says it is ‘the task of healthcare to keep the patient together’. These examples of why CIP is carried out are consistent with values expressed in the policy regarding coordination, namely that the system must strive to offer coordinated support to the service-user.

Although the purpose of CIP is described as addressing problems in the system, the objective of CIP is described in a way that emphasizes problems on an individual level, e.g. problematic behaviour or lack of skills, and the importance of the service-user’s willingness to change for the coordination to succeed. Individual goals based on the person’s needs and wishes are described as an important part of CIP, even though it is not specified in the legislation (SFS 2001:453; SFS 2017:30). This is justified in the interviews by the concept of participation, where individual-focused goals are seen as an element of the service-user’s participation. A nurse from a municipality says that ‘To me, participation, from a patient perspective, is kind of that as a patient I can formulate what I want in the future’. This is in line with central values, upon which participation rests, about the person coming first and the importance that interventions are based on the service-user’s needs and wishes (Guldvik and Askheim 2022; Knutsson and Schön 2020; McCausland et al. 2022; Waters and Buchanan 2017). The consensus regarding the importance of these service-user goals, despite its not being legally required, can be seen as an example of a rationalized myth constructed by the actors within, and between, the organizations to realize ambitions of service user participation (Powell and DiMaggio 1991; Scott and Meyer 1994).

In the interviews, these examples occur when the purpose of CIP is mainly described in terms of structural problems within and between organizations, and the goal of CIP is mainly formulated in terms of a need for change at the individual level. This creates tension in the participants’ descriptions in different ways. A nurse from the Region exemplifies this by describing a ‘complex case, where many people are involved, so a lot of coordination is needed’. The nurse describes a CIP-meeting where the purpose is coordination but where the goal of the plan is for the person with a disability to change their behaviour.

‘at the meeting itself, it felt like everyone understood, or that the patient understood the seriousness… she was, after all, involved. She had written a long letter which she began to read out … everyone suggested things that she herself had brought up that she wanted help with. … I got the feeling that she was involved in what was decided’ (Nurse, Region)

Since the goals were formulated based on what the person suggested, the nurse was surprised that the service-user did not follow the plan. At the same time, the nurse describes how ‘ the municipality thought that psychiatry could do more, and psychiatry thought that it was up to the municipality’, and that collaboration between them was not discussed during the meeting. Another example is expressed by a physiotherapist from the region who says, ‘often there’s an overall reason, but when you get down to individual goals, it can get more unclear’. This ‘overall reason’ can be interpreted as based on problems in the system and values linked to coordination, making it difficult to link service-user goals based on values to participation. There is also a risk of CIP focusing on the service-user’s shortcomings and failures instead of the organization’s ability to assist the service-user. As a social worker from the municipality puts it: ‘you have CIP when there’s a problem. And then it’s not always so easy for someone who maybe sees it more like there will be failures’. From the service-user’s perspective, CIP can thus be associated with failure on an individual level, since CIP is only used when there are problems that are formulated as service-user objectives in the plan.

Unequal power relations

The service-user’s participation seems to be affected by relationships between the actors in CIP. In the interviews, it is described how the relationships are unequal in terms of the possibility to influence the conduct and content of the meeting. Some participants have more influence than others. This is partly about the service-user in relation to the others, but also about the relationship between actors from different professions and organizations. CIP seems to amplify the service-user’s vulnerability, because the planning tends to focus on the service-user’s shortcomings and because the formal structure of the meeting causes anxiety.

‘It can be difficult for many perhaps to convey what you want in the meeting and at all to convey how you feel. And, what’s difficult can be that it can be a pressured situation and you can feel forced to answer yes to this and that. Because you’re sitting in a meeting, and there are many people sitting there, and everyone’s asking, ‘do you want this?’ … is that really participation?’ (Social worker, Region)

The participants describe, in line with previous studies (Browning, Bigby, and Douglas 2021), how dependent a person with intellectual disability is on others. The social worker in the quotation above gives examples of how the service-user is described as ‘small’ in relation to the other participants in the meeting. This can cause pressure to agree against one’s will. In the interviews, there are repeated descriptions of how the service-user’s participation requires support from someone who knows the person, e.g. a close relative or professional who provides daily support. These are described in the interviews as being ‘one with the individual’ (Team leader, private housing), that they have a common voice or that they represent the person. At the same time, professionals belonging to this group express that they play no active role in the decision-making process or, as a support worker expresses it, ‘they haven’t asked for our input so much’. This may indicate that those who know the person best do not have the authority to pursue issues or exert influence on how adjustments are made to facilitate the service-user’s participation.

The participants also describe challenges when it comes to interorganizational collaboration. A social worker from a municipality describes that ‘It’s a bit like we trip over our own toes as soon as we meet them [The region and the social insurance office] … it’s like, yes, like we look up to them a bit’. This can be compared with previous studies showing that interorganizational work is affected by the balance of power between participants and by incompatible organizational structures. Existing hierarchies between participating organizations and professions create unequal power relations between the participants in the meeting, which affects who has interpretive precedence and the power to influence both planning and decisions (Auschra 2018).

Discrepancy between ideals and practice

The analysis suggests that there is a discrepancy between the ideal of participation that participants describe, and how it works in practice. The professionals describe how they would like to involve the person in the coordinated planning, but also that it is not always possible to do so in a beneficial way.

The three subthemes presented below describe how the professionals’ statements about what participation is and how it should be performed express an idealized image that can be described as decoupled from practice.

The service-user should be an active co-creator but becomes a passive recipient

In the interviews, the service-user’s participation in CIP is described in terms of how actively the person is committed, takes responsibility, and exhibits willingness and motivation to change. A psychologist from the region says, ‘Participation can be responsibility as well, the same word, participation and responsibility’. This emphasis on the service-user’s activity can be compared with previous studies that describe the importance of the person being an active co-creator in the planning process (Knutsson and Schön 2020; McCausland et al. 2022). Despite this, a person with an intellectual disability is described in the interviews as a passive recipient, who takes no initiative and only answers the questions that are asked. Some participants believe that the disability itself can limit the possibility to be an active co-creator.

‘It’s a difficult group to give participation to … absolutely, they have a certain amount of participation, but it may not be so applicable to this particular group. They need a bit more guidance. … the patient group isn’t used to helping themselves either. So it becomes like a passive participation, [that’s how] I’d put it’ (Nurse, Region)

Others concretize participation linked to daily activities, such as choosing food and recreational activities, rather than participation in CIP. This may be an indication that the professionals have difficulty putting participation in CIP for people with intellectual disability into practice, or that it has not been prioritized. This contributes to the descriptions of how the ideals about CIP do not match how it is carried out in practice.

Participation requires individual adaptations that are limited by rules and working methods

Rules regarding CIP seem to play a central role in governing the professionals’ work with participation. There are several examples where organizational rules and conditions limit the possibility to translate ideas and knowledge about participation into practice.

‘we run around so much at meetings … we may not have prepared for a meeting, and then there’s no plan for preparing the individual for a meeting. … the contact persons at housing support always try to have dialogue with the user, but I wouldn’t call it preparation’. (Social worker, municipality)

Like the social worker in the quotation above, all the participants describe aspects of the service-users’ participation in line with results from previous studies, e.g. the importance of communication (Browning, Bigby, and Douglas 2021; Jones, Jess, and Schön 2021a) and special adaptations like preparation (Browning, Bigby, and Douglas 2021; McCausland et al. 2022). Despite this knowledge, professionals describe being hindered in practice by working conditions, rules, and formal structures.

‘and this thing with signing one’s name. … It just makes the meeting feel even more unnatural and … bureaucratic … and formal and even more, like, pretentious, so that no one wants to lead it either, because no one wants to hold such a big, pompous meeting’. (Social worker, municipality)

This is another example of how rules and mandatory procedures obstruct the implementation of ideas about adaptation and relationship-building, with participants describing CIP as a ‘big affair’ (support worker, municipality), with little opportunity for flexibility.

The service-users should come first, but instead they are pushed aside by collaboration issues

A prerequisite for participation described in the interviews is that the person must be given a central role in CIP. This is seen in a general description of the importance of an individual being at the centre of his or her own life, and in specific examples of how planning should be based on the service-user’s needs and wishes. As previous studies have shown, this type of person-centred practice is essential for the service-user’s participation (Browning, Bigby, and Douglas 2021; Eriksson et al. 2020). The context surrounding CIP, which is characterized by interprofessional and interorganizational work, seems to affect the likelihood of putting the person first. A social worker from a municipality says that ‘the social insurance office, the region and the municipality…… No, then all flexibility disappears throughout history. Then it’s just like so many silos: ‘this is my desk’ ‘this is my desk’ and ‘this is my desk’.  In the interviews, these examples occur when issues related to the collaborative climate obscure the focus on the individual and participation. An example is the importance of having a clear and common purpose for CIP, which is described in the interviews as essential for the service-user’s participation, partly because it enables preparation, but also because the planning becomes transparent and possible to influence. This is in line with previous studies on interprofessional and interorganizational work that highlight the importance of common principles, purposes, and goals (Auschra 2018; Beck, Rasmussen, and Nielsen 2021; Biringer et al. 2020; Xyrichis, Reeves, and Zwarenstein 2018). Despite this agreement, the analysis indicates that professionals may have different views on the CIP policy. Some of the participants emphasize information transfer and division of responsibilities, while others emphasize continuous collaboration. A team leader from a private housing company exemplifies how professionals’ differing perspectives obscure the service-user’s central role in planning, saying ‘at the meeting, we’ll all have different questions, which means that we may not meet … he’s not what we’re putting on the table, instead everyone has their own agenda’. When participants in the meeting have different agendas and different perceptions of why CIP is needed, there is a risk that you get caught up in questions about collaboration instead of focusing on the person and his or her participation.

Discussion

The purpose of this paper was to examine professionals’ experiences of working with participation in CIP for people with intellectual disability. There were two research questions: How can participation in CIP for people with intellectual disabilities be understood from the perspective of professionals? How can a neo-institutional theoretical lens illuminate possibilities as well as obstacles to participation in CIP for people with intellectual disability? The answers to these questions are closely intertwined in the themes and are therefore discussed together. The paper contributes valuable knowledge about how the policy’s intentions regarding participation are put into practice by the professionals and how this can affect the possibilities for people with intellectual disabilities to achieve their right to participate.

The results indicate that working with service-users’ participation in CIP is limited by various boundaries within and between the organizations, even though participation is considered vital, and its importance is uncontested. The paper suggests that, from the perspective of professionals, participation in CIP needs to be understood in the light of the interprofessional and interorganizational context of the planning process. Although participation is taken for granted, this context contributes to different kinds of tensions and obstacles that make it difficult for professionals to put ideas about participation into practice. Participation in CIP seems to be in line with common knowledge about participation in individual planning. However, the difficulty of concretizing participation in CIP and experiences of meetings where different actors have different agendas may suggest that there is no common understanding of CIP. According to Scott and Meyer (1994), shared meaning is needed for an activity to become collective. If one actor in CIP is there for the purpose of transferring information and distributing responsibilities, while someone else is there to find forms for continuous collaboration around the person, there is a great risk of misunderstandings and failures. From a neo-institutional perspective, the lack of consensus about CIP can be explained by the fact that the policy has been interpreted and translated in different ways in different organizations and professions, influenced by each organization’s rationalized myths (Scott and Meyer 1994). In CIP, the professionals find themselves in a situation characterized by tensions between multiple institutional logics and unequal power relations, as well as different interpretations of the policy. This can lead to misconceptions that force the professionals to solve collaboration issues instead of focusing on the service-user’s participation. The unequal power relations will also affect who has interpretive precedence regarding the purpose and goals of planning. Although the person and those who know him or her best are considered vital for participation, they are not the ones in the strongest position when it comes to influencing the execution of planning and making decisions about what should be done. This raises questions about how the policy’s intention to increase the service-user’s influence over coordinated planning processes is even possible.

The policy on CIP expresses values regarding both coordination and participation. These values reflect normative ideas about collaboration, cooperation, and coordination in a fragmented welfare system, where the system should be responsible for providing cohesive care. It also reflects normative ideas about support based on the individual’s needs and the right to have control and influence over the support more generally. The key concepts, coordination and participation, rest on partly different values and institutional logics, which creates tension that the professionals must negotiate when putting the policy into practice. The results indicate that the professionals handle this tension by distinguishing between the purpose and the objectives of the CIP. The purpose of CIP is described in terms of values linked to coordination – that organizations, professionals, and various interventions within the welfare system need to be coordinated (Lægreid et al. 2015; Pedersen 2020). Activities such as information transfer, division of responsibilities, cooperation and collaboration are seen as ways of bridging the problems created by a fragmented and specialized welfare system. Based on this institutional logic, the objective of CIP should be to provide cohesive care, for example goal formulations about information sharing, division of responsibilities, and collaboration between professionals and organizations. However, the objective in CIP seems to be formulated as a need for change in the service-user, e.g. a change in behaviour, or the development of an ability. This reflects a different institutional logic regarding participation, where values such as self-determination and the right to participate and have influence are emphasized (Eide, Josephsson, and Vik 2017; Guldvik and Askheim 2022; Molin 2020). Formulating goals based on the service-user’s needs and wishes can be seen as a tool for achieving participation, which in CIP seems to be concretized through goals based on the service-user’s need for change. Because of these two institutional logics, the formulation of the problem to be solved with CIP ends up emphasizing the person, regardless of where the problem really lies. When CIP is followed up to determine whether the plan has been successful, it is the service-user’s goals that are assessed, not whether systematic problems have been solved. If the goals of CIP are not achieved, it can be interpreted as a failure of the service-user, placing responsibility on the person rather than the organizations or professionals. This can be compared to Breimo’s (2016) discussion about the risk that individualization in the welfare system will lead to a focus on treating the individual rather than working with structural problems. Focusing on the need for service-users to change, either in terms of their behaviour or their situation, leads to structural problems being set aside and rarely coming under scrutiny. For the service-users, this can mean unwelcome support offerings instead of improvements in the welfare system that can lead to better conditions in the future. This can also be related to Guldvik and Askheims’s (2021) discussion of how formulations in policy documents can give the impression that service users have influence even though control lies in the system and with professionals. Focusing on the service-user’s goals and need for change can give the impression that the service-user’s participation is central and real, even though the service-user has little influence on the system that is supposed to provide the support.

This paper also reveals a discrepancy between policy-based ideals regarding participation in CIP and the practice that professionals describe. From a neo-institutional perspective, the gap can be explained with the concept of decoupling (Paradis 2017) and seen as a reaction to the institutional pressure on organizations to work with both coordination and participation. Through decoupling, the organization can avoid internal conflicts by ‘allowing’ practice to deviate from policy, while retaining its legitimacy through the policy itself. One explanation could be what Miller and Paradis (2020) describe as inevitable pressure within the system on the actors tasked with putting a policy into practice. When ideals are incorporated into the formal structure, as rules, routines, and IT systems, it creates an image that these ideals are already integrated into the system and conveys ideas about how they work. This can make the idealized image appear real in the minds of individuals and in the formal structure of organizations, regardless of what the practice looks like. The professionals who must put the policy into practice are left to deal with this pressure while at the same time contributing to reconstructing the idealized image.

In addition to explaining the discrepancy between ideals and practice, the concept of decoupling can also help explain why the participants in this study described experiences of participation in CIP for people with intellectual disabilities being difficult to accomplish. The professionals seem to have ideas about how they should work with participation in CIP, that the service-user must be an active party at the centre of the planning, and that people with intellectual disability need special adaptations to be able to participate. Although these ideas are also incorporated into formal rules and structures such as IT systems, there seem to be many obstacles to putting them into practice and therefore also to concretizing what participation in CIP really means.

The discussion leads to questions about to what extent the institutional logics on which participation and coordination are based can be combined. These two logics are based on different ideals, values and meanings that can appear contradictory. When the policy on CIP, with participation as a central value, is to be put into practice by the professionals, a gap arises between the policy’s ideal description and the reality of everyday work. The professionals are left to interpret the policy and deal with implementing it in a reality where they are constrained by conditions that obstruct both the service-user’s participation and the coordination of services. Professionals from different organizations meet in CIP without specifying how they interpret participation or the objective of a CIP. Instead, it seems to be taken for granted that these ideas mean the same thing to all professionals. The risk of misunderstanding is great, and this contributes to tensions that in turn affect the service-user’s participation. As a central policy value, participation would therefore benefit from being defined more clearly, both in the policy itself and in working for consensus between all participants in CIP.

This study indicates that professionals seem to have a good idea of how service-user participation can be achieved in coordinated planning, but there are many obstacles to putting this into practice. The results suggest that those participating in a CIP, including the service-users, would need to have an open discussion about core values and different perspectives. By exposing different points of view on coordination and participation, both the meeting and the service-user’s participation can be prepared in a better way. The results also indicate that the professionals need to be given better conditions to prepare and adapt the coordinated planning. Considering that adaptations also require good knowledge of the person’s needs and abilities, careful consideration should be given to who is suitable to have influence over the coordinated planning. This also includes considering how best to meet the need for independent advocacy and/or provide support to facilitate self-advocacy.

Strengths and limitations

This is a qualitative study based on interviews with 17 professionals, which means that the results cannot be generalized to all contexts where CIP is conducted. However, this is not the goal of qualitative studies, which instead aim to develop an in-depth understanding of a phenomenon.

A limitation of this paper is that it only considers the professionals’ perspectives on the participation of people with intellectual disabilities and lacks the voices of disabled people. Since participation of people with disabilities in research is as important as being involved in CIP, this can be considered a major weakness of this paper. However, the professionals’ perspectives have in this paper been shown to contribute valuable knowledge about how the policy is put into practice. It also contributes knowledge on which factors can affect the possibility of participation in the coordinated planning of support for a person with an intellectual disability. To get a comprehensive picture of participation in CIP, this paper needs to be supplemented with service-users’ perspectives.

Conclusion

The importance of the service-user’s participation in coordinated planning seems to be widely accepted among the professionals, along with ideas about how participation might be achieved. However, tensions between different institutional logics and unequal power relations, as well as policy-practice decoupling, are obstacles to professionals’ efforts to perform interprofessional and interorganizational work based on shared meanings about the service-user’s participation in coordinated planning. There is a risk that the service-user, who is in the weakest position, will bear the consequences of any misunderstandings and failures. This could take the form of unnecessarily tense and unpleasant meetings, the planning not being adapted to the service-user, or a failure of coordination being made into a failure of the person. Exposing these tensions and obstacles to participation can increase the possibility that actors who gather in a coordinated planning prioritize efforts to achieve shared meanings and find ways to transform ideals about participation into practice. One way to do this could be to clearly distinguish between goals for solving service-users’ problems and goals for solving problems in the system.

Acknowledgements

We would like to thank the participants for generously sharing their experiences.

Disclosure statement

No potential conflict of interest was reported by the author(s)