Empowerment and pathologization: A case study in Norwegian mental health and substance abuse services

Abstract Context Service user involvement in service development and research is an international goal. However, research illuminating the patient stakeholder role is limited. Objective The aim was to explore what may hinder patients’ voices being heard when collaborating with staff and leaders to improve services. Design This action research project targeted Norwegian public mental health and substance abuse services, utilizing co‐operative inquiry principles. Data were collected and member‐checked collaboratively by the researcher and coresearchers. Results Results centre on patient involvement in services, service development and research. The patient voice was regarded as important but not necessarily decisive, as patients’ change needs could be perceived as pathology‐based. Patients provided feedback about fellow patients and medication—opioid maintenance treatment, in particular. Barriers to patient involvement included patients not being permitted to influence other patients’ individual treatment and a leader's difficulty accepting patients’ medication advice. Additionally, an apparent hierarchy among the professionals may have disempowered some staff members. Discussion Results point to an organizational diagnostic culture, where stigmatizing and risk pathologization may limit patient input. Empowerment appeared to be perceived as something allowed by the staff and leaders, at their discretion. Although all parties may have agreed that patient involvement was valuable, acting as a united group about opioid maintenance treatment appeared difficult. Conclusion Barriers to patient involvement may hinder the availability and efficacy of patients’ perspectives in service development. Awareness about reciprocal empowerment might contribute to service users’ voices being heard, enabling a united voice from service users and providers regarding service development.

health and social services" has been a policy aim since 1988 10 (p. 28); indeed, it was a prerequisite for upgrading public services in national action plans for mental health and substance abuse services. 11,12 However, user participation in these services has been evaluated as insufficient. 7,13 While service user participation in decision making has been explored, [14][15][16] obstacles to patient voices in mental health and substance abuse service development remain under-researched.
We conducted an action research project in Norwegian public specialized mental health and substance abuse services (SMHS) to explore service user participation in service development. [17][18][19] The study's primary objective was to develop a "user participation method" that ensured both service user and service provider impact on service development-with the idea that the process of knowledge development would benefit from patient, staff and leader involvement and participation in the research 20 and in turn could inform service development initiatives and decisions. In research, public involvement (when service users/patients/carers are involved in the design/delivery of the research) is often distinguished from participation (when data are collected from them in interviews or trials). 21 However, in the context of services and service development, user/patient involvement (as a term) is not used in relevant Norwegian legislation. [22][23][24][25] In national guidelines and action plans, involvement and participation are used interchangeably. 7,12,26 These two concepts are therefore distinguished in our research design but, in the rest of this article, involvement encompasses both participation and involvement in research, services and service development. With this approach, we investigate elements that appear to hinder patients' impact on decision making and their ability to be heard. Drawing on theories of empowerment [27][28][29] and pathologization, [30][31][32] we discuss obstacles to patient involvement and address the following question: What may keep patients' voices from being heard in their collaboration with staff and leaders to improve mental health and substance abuse services?

| Empowerment and pathologization
Emerson claims that power is relational. The power to control or influence someone "resides in control over the things he values" 33 (p. 32): How much one invests in goals mediated by another-and whether those goals can be achieved elsewheredetermines how dependent one is on that person. If one person is power-disadvantaged, balancing operations may be set in motion, restoring an unbalanced relation by increasing or decreasing dependence between the parties to reduce the power advantage. 33 Empowerment thus springs from power and can be interpreted as a three-term concept: strength → force → power 34 (p. 21). As such, "persons or groups that are in a situation of disempowerment shall acquire the strength and power to emerge from disempowerment" 34 (p. 21). One approach is for service providers to strengthen service users' ability to gain control over their lives. 34 Paradoxically, service providers may then assume that they are empowering, rather than collaborating with, service users. So that, empowerment may be taken from service users and returned to them diluted, as a reproduction or magnification of oppressive practices. However, the potential for self-empowerment among both service users and providers must be considered. 35 Empowerment can be individual and reciprocal when service providers and service users engage in a joint cause-collaboration and active dialogue between the parties may thus be conducive to collective empowerment, 27 as "self-directing persons develop most fully through fully reciprocal relations with other self-directing persons" 17 (p. 3).
Freire regards oppression as a hindrance to one's pursuit of self-affirmation and liberation. 27 His liberationist philosophy is a founding part of empowerment theory, 27 in which "learning to perceive social, political and economic contradictions, and to take action against the oppressive elements of reality" 27 (p. 35) is a central tenet. Freire describes a process that makes people responsible subjects participating in history, encouraging them to pursue self-affirmation. 27 Although contextual knowledge and collective empowerment are fundamental to this theory, self-empowerment is an integral component. Individuals must seize their own empowerment when "engaged in the fight for their own liberation" 27 (p. 53). Freedom from oppression is thus "acquired by conquest, not by gift" 27 (p. 47). When in a position to embrace their freedom, the oppressed can "unveil" and confront the culture of domination through transformational action and reflection-a process Freire terms praxis. He argues that the oppressed must commit to unveiling the world through praxis and that dialogue can collectively empower both parties to name and transform dominant structures together. 27,28,36 Changing public services can be challenging in an organizational culture founded on professional traditions; these patterns of assumptions represent distinctive organizational cultures that recreate problem-solving mechanisms, ensuring harmony and predictability. 37 In 1965, Løchen described an organizational diagnostic culture that muted the impact from the collision of roles, ideals and systems in a Norwegian psychiatric hospital. 30 In this diagnostic culture, causes of behaviour were attributed to the individual patient, hindering patients from promoting their claims because their protests could be added to existing pathological assumptions. Furthermore, patients had to be controlled because they "might use their right to codetermination in a way that is harmful to themselves or conflicts with the system" 30 (p. 219). Current literature points to a contemporary diagnostic culture wherein life problems may similarly be perceived as pathological conditions or somatic diseases. 31,32 As such, stigmatizing pathologization is defined as moral judgement of "inappropriate" behaviour associated with certain diagnoses, and risk pathologization predicts hypothetical future scenarios using "a particular susceptibility to illness" 32 (p. 286). This process can constitute discriminating stigmatization and enable self-pathologization. Depathologization is described as an attempt to change what is viewed as incorrect pathologization of behaviours. 32

| CONTE X T
The inquiry was conducted in a voluntary inpatient SMHS treatment unit in Norway where opioid maintenance treatment (OMT) was part of the services. OMT is increasingly provided in Norway, with 7055 patients in treatment in 2013. 38 It is an "interdisciplinary specialized treatment for opioid dependence where the requisitioning of addictive medicines in a specific dosage (substitution treatment) is one measure in the overall rehabilitation process" 39 ( §3). Methadone and buprenorphine (Subutex/Suboxone) aim to maintain or block opioid receptors in the brain, thereby preventing withdrawal and cravings for opioids. 40 According to OMT legislation, SMHS is responsible for initiating and downscaling medication. 39 However, national OMT guidelines state that the risks of relapse and overdose mortality are high, 40 so termination should "not be recommended unless there is good reason to believe that the patient will manage without opioids" 40 (p. 90).

| Research design
This descriptive single-case study applied the cyclical principles of action research, starting with conceptualizing and particularizing the problem and moving through several interventions and evaluations. [17][18][19][41][42][43][44] The inquiry was designed in line with co-operative inquiry principles 45 -researching with rather than on people seemed an appropriate way to facilitate patient, staff and leader collaboration on knowledge and service development. 46,47  She attended all formal and most informal service-related meetings that were relevant to the study's objectives, including treatment, staff, management meetings and the everyday morning meeting between staff, patients and (sometimes) leaders. She provided training and supervision to qualify coresearchers to lead test interviews and 6 stages of multistage focus group interviews 2 , 51 10 individual interviews 52 and 4 dialogue seminars. 53 In addition to service meetings and the scheduled inquiry (see Figure 1), there were ad hoc inquiry meetings with leaders, staff and/or patients to address any issues raised in the inquiry. For example, when staff and PCs encountered communication difficulties, a dialogue meeting was facilitated to clear up misunderstandings between staff and coresearchers in the inquiry. This meeting was neither scheduled inquiry nor service meeting, but was solely to encourage dialogue because of conflict.

| Four phases of inquiry
In continuous interplay between reflection, experience and action, practice was constantly refined. 46 The project was structured according to the four phases of knowledge development in cooperative inquiry: (a) propositional knowledge-knowledge expressed in theories or statements; (b) practical knowledge-that is, skills and competence; (c) experiential knowledge-knowledge developed in "direct encounter face-to-face with persons, places or things" 54 (p. 230); and (d) critical scrutiny of the propositional knowledge-knowledge arising when the original propositions and questions are reconsidered and amended. 18,45,473 We used these phases as a framework only, as qualities from one phase may emerge (or merge with) another. 17 Phase 1: The aim in this phase was agreement on a joint focus and to propose action. 20 Here, it was important to explore and document coresearchers' propositional knowledge about the SMHS. 18 There were nine researcher-led coresearch work groups-four with patients, four with staff. These SCs and PCs brainstormed about possible service developments, suggesting service improvements and training for staff and patients. They also developed interview guides for individual interviews with staff and patients and, in a final joint meeting, agreed on prioritized suggestions and established a 1 Excepting one former patient who received remuneration for collaborating with staff to provide drug training to staff and leaders. 2 Multistage focus group interviewing facilitates knowledge development about one topic through multiple stages; these occur predominantly with the same participants, using the same interview guide, to ensure deepening of perspectives and accumulated knowledge through explorative dialogue. A moderator encourages inquiry, supported by an observer who provides a summary of statements mid-way through the interview and at the end of each interview for member feedback. A summary of the previous interview is presented in the next interview and participants are encouraged to continue the inquiry until 'saturation' is achieved. In this inquiry, there were eight multistep focus group interviews in six stages (excluding the five test multistep focus group interviews in phase one-see Figure 1): five multistep focus group interviews in phase two and three in phase three. Data for this article are from three of the five multistage focus group interviews conducted by patient coresearchers in phase two (see Figure 1 and descriptions below). The number of participants and coresearchers in these selected multistage focus group interviews is listed in Table 1, below. joint focus: "to develop the services offered by this treatment facility for the better" (SCs and PCs, Joint Work Report). Their statements and propositions were documented in the Joint Work Report, which was used internally in the SMHS to inform plans and follow-up actions. The report also provided a propositional knowledge baseline regarding the service developments that followed. Multistage focus group interviewing was assessed by SCs and the researcher as a potential method.
Phase 2: This phase's aim was to explore practical knowledge-that is how things were done. 46 One PC conducted five semistructured interviews with patients. Of particular interest were the answers to the following questions: "Do you feel that what you say at the morning meeting is listened to?" "Do you think that it is difficult to express your opinion to staff and management for fear of consequences in your treatment?" The interview guide for multistage focus group interviews was developed in this phase, with "What can be done to improve the

Involvement/ Coresearch
Before the inquiry One planning meeting (ad hoc) setting?" Three of the six multistage focus group stages (see Figure 1) were

| Data collection
The minutes and reports were written in Norwegian and translated by a translation service. To ensure familiarity and readability, the researcher wrote in accordance with the documentation tradition in this SMHS. Therefore, these were predominantly condensed descriptions of the conversations, not verbatim transcriptions. [55][56][57] Some interactions, however, were quoted word-for-word. To make a clear distinction between the two, verbatim sentences are underlined below. Relevant data for this article include the Joint Report, and minutes from a planning meeting, a dialogue meeting, five individual interviews and three multistage focus group interviews (see Table 1).

| Data analysis
In this single-case study, the relationship between researcher and contributors was "one of mutual and simultaneous influence" 58 (p.

17). The minutes and reports were developed and interpreted in re-
lationship between the contributors and researcher. Objectivity or generalization was not the intention. Rather, to ensure trustworthiness and authenticity, these data were rigorously member-checked by the respective contributors, following Lincoln and Guba. 58 The minutes/report were subjected to qualitative content analysis using NVivo 9. 55,59 Here, pathologization emerged as a central topic. The investigation alternated between induction and deduction, in qualitative conventional and directed content analysis. 59 The results were interpreted in the light of empowerment 17,27-29 and pathologization literature. 31,32,60,61 The inquiry was approved by the Norwegian Centre for Research Data (NSD).

| RE SULTS
Our results indicate that although staff and patient empowerment were generally perceived as a goal, some leaders and staff were concerned that pathology could motivate-and therefore prejudice-patients' contributions. Patients also reported having been and fearing being pathologized by staff. Further, our results point to the underlying assumption that patients were allowed to be involved.

| "Change needs may be pathology-based"
At the planning meeting, leaders and staff emphasized "the importance of offering satisfactory treatment" during the inquiry, urging the researcher to design the inquiry in a way that would "empower them [the staff] on par with the users" (planning meeting, leaders and staff). These participants were positive about 4 Dialogue seminars comprised the following: Coresearchers presented preliminary findings and proposed changes. Participants were asked to individually prioritize five topics (from the previous presentation or their own initiative) that they wanted to pursue in fur-

| "Permitted to be involved"
During the inquiry, staff and leaders changed attitudes towards patient involvement. Both staff and patients referred to decision making and involvement as something the patients "should be allowed to be part of" (individual interview, staff 5): In general, he gets a hearing at the morning meeting if it is in the interest of the staff. It is possible to raise issues, but it has no impact.

(individual interview, patient 4)
However, some patients did feel heard in the morning meetings.
One patient said, "If he doesn't perceive that he is understood, he can take it up on a one-to-one basis" (individual interview, patient 3).
Some leaders set barriers to patient involvement: "The man- (PCs and leader, dialogue meeting) In this meeting, the leader responded that it was difficult "to accept advice about medication, for example, because it can easily be manipulated" (leader, dialogue). The PCs, however, insisted on providing guidance because they "also have competence about how medicines work" (PCs, dialogue meeting).
Patients continued advising about medication, as they were concerned about large doses in OMT: The interviewees feel very provoked to see patients One response to these concerns was that observing OMT patients could be regarded as something positive, in that it might discourage other patients: "The leader said that the experience is that OMT treatment is seen as attractive, while at the same time scaring people from going so far" (leader, stage 3). However, it seems the decision to provide OMT was never the leaders' to make: "The requirement that all Some staff, patients and leaders seemed to agree that patient involvement was up to staff and leaders, but milieu staff explained that because treatment decisions were made on a higher hierarchical level, they were not allowed to make decisions in collaboration with the patients. Also, there were several distinct limitations to patient involvement. Though patient involvement appeared to be a valued goal, by limiting patients' impact on decision making the power-advantaged may have ensured an imbalanced relation (following Emerson 33 ).

| D ISCUSS I ON
SMHS codes of conduct for staff and leaders stipulate that care of patients is their first concern, in the form of "satisfactory treatment"-a norm rooted in legal requirements, guidelines, organizational policy and patient expectations. Against this backdrop, perhaps staff and leaders believed that sometimes their own voice should carry more weight, and only so much empowerment was possible.
Many patients reported fear of becoming misunderstood and diagnosed incorrectly. One patient described confronting staff about certain characteristics in his chart that he felt were misattributed.
His self-justification may thus be understood as an attempt to depathologize himself. His reaction may also be interpreted as an act of self-empowerment, as he freed himself from incorrect characteristics. This patient actively challenged "the dominant structure" 27 and was arguably self-empowered. One may also interpret this as an example of staff and leaders allowing empowerment; however, as Freire argues, empowerment is not a gift. 27 Perhaps, a balancing operation enabled this power process, whereby the patient cultivated social relations with staff and leaders, thus acquiring the power advantage to influence their behaviour. 33 Patients were increasingly invited to be involved, and status recognition may have influenced their involvement during the inquiry. Staff and leaders began facilitating patient involvement more often, which-together with patients' experience of gratifications (via ego rewards and gift-card compensation)-may have increased relational balance and encouraged patients' involvement. 33 However, both staff and patients also referred to patient decision making and involvement as something that the staff decided to allow. Thus, in this context, empowerment appears to have been perceived as something granted by the staff and leaders, rather than an opportunity seized by the patients. 27 Furthermore, a staff-patient relational imbalance also seemed apparent, due to a linear power network where staff intermediation between patients and decision makers was central. 33 There also appeared to be a power imbalance between milieu staff, treatment staff and leaders. Interestingly, empowerment theory suggests that a disempowered staff may find it difficult to facilitate self-empowerment among patients, potentially resulting in the replication and multiplication of oppressive practices. 35 If the staff lacked experience with acting as responsible subjects participating in changing their own disempowered situation, how could they empower patients to take action against oppressive practices?
Other obstacles to patients' voices being heard were apparent, including the leaders' fear of manipulation and belief that patients should not be involved with fellow patients' individual treatment.
Additionally, several patients appeared committed to contributing their perspectives on OMT, but their arguments seemed obstructed by the leaders' conviction that OMT deterrence was a positive.
Freire's notion of praxis is useful in conceptualizing how these patients committed to unveiling, naming and transforming this situation. 27

| CON CLUDING REMARK S
Results from our study of a Norwegian SMHS treatment unit target several barriers that may have hindered patients' ability to be heard by staff and leaders: (a) feedback deemed by staff/leaders to be pathology-based would not necessarily influence decision making; (b) patients were not permitted to impact fellow patients' individual treatment; (c) empowerment seemed to be perceived as something to be controlled and granted by leaders and staff; and (d) due to contextual influences such as legislation, guidelines, organizational policy and codes of conduct, it may have been difficult for staff and leaders to listen to and explore patients advice.
We show how these barriers may limit the beneficial contribution of patients' knowledge about more responsive services. Further, we sought to explore empowerment as something that can be gen-

ACK N OWLED G EM ENTS
The authors would like to thank all coresearchers and participants, Professor Jan Erik Karlsen and Professor Willy Pedersen.