The Disjuncture between Medication Adherence and Recovery-centered Principles in Early Psychosis Intervention: An Institutional Ethnography

Abstract

To examine how recovery principles are enacted in an early psychosis intervention (EPI) clinic, we used an institutional ethnographic approach focused on how the ideology of medication adherence organizes young people’s experiences of EPI services. Methods included ethnographic observation, in-depth interviews with 27 participants (18 clinic staff, four young people, and five family members), and textual analysis of clinic documents (e.g., case files, administrative forms, policy reports). The disjuncture between service providers’ intent to provide recovery-principled care and the actual experiences of young people is actualized in institutionalized practices of informal coercion around medication adherence, which we identify as “enticing,”“negotiating,” and “taking responsibility.” We link these practices to institutional accountability, risk, and efficiencies, and discuss the need for a shift in medication management approaches in EPI settings.

Introduction

The imperative to provide recovery-oriented services in mental health care settings, including early psychosis intervention (EPI) clinics, has become foundational to mental health policies worldwide. Among the tenets of the recovery approach, an essential feature is purported to be the prioritization of autonomy, empowerment, and respect (Le Boutillier et al. 2011). However, in the context of psychiatric services, historically characterized as paternalistic and coercive (Burstow 2015; Sjostrom 2006), the translation of recovery policy into practice is complex, challenging (Le Boutillier et al. 2011; Rugkasa et al. 2014), and unevenly taken up (Morant, Kaminskiy, and Ramon 2015; Morrow 2013). This disjuncture is particularly salient in antipsychotic medication practices where shared decision making, a pinnacle of person-centered care (Harris et al. 2017), is not easily achieved (Grunwald and Thompson 2021; Morant et al. 2015). Tensions contributing to the challenges of applying the recovery model include discrepancies between user-defined subjective conceptions of recovery and psychiatric professionalized versions (Baker et al. 2013), and the centrality of promoting service users’ agency and self-determination versus service providers’ responsibility to fulfill their duty to care, mitigate risk, and manage efficiencies (Davidson et al. 2006; Stickley and Wright 2011).

As one of the earliest adopters of the recovery-oriented approach to mental health care, early intervention services for young people (typically aged between 14 and 35 years) experiencing a first episode of psychosis (FEP) provide an important setting to explore this issue (McGorry 2015). Now the dominant international model for treating psychosis, EPI services aim to be client-centered, flexible, and collaborative, empowering young people with the right and the responsibility to engage in shared decision making about their treatment options (Ministry of Health and Long-term Care 2004, 2011). Treatment involves low-dose medication and psychosocial services to support young people’s return to school, work, and social activities—delivered in a community-based setting by a multidisciplinary team that may include psychiatrists, nurses, social workers, and peer support workers (Ministry of Health and Long-term Care 2004, 2011). Benefits include improvements in clinical outcomes, functioning, quality of life, and user satisfaction compared with regular treatment (McGorry, Ratheesh, and O’Donoghue 2018). A recent study indicated that EPI teams have a higher recovery orientation than teams providing care to longer term psychiatric service users (Leamy et al. 2016). However, how these recovery practices unfold in young people’s interactions in EPI programs is not clear. While research exploring young people’s experiences with EPI services has highlighted the importance of recovery concepts such as empowerment (Grealish et al. 2013) and self-agency (Bjornestad et al. 2017a), largely absent is an understanding of the discursive, procedural, and organizational factors shaping the experiences of service providers and young people within the context of recovery-oriented care.

Institutional ethnography (IE) is uniquely suited to this investigative task as it is an approach to inquiry that aims to discover how people’s everyday experiences are shaped and organized by their interactions and connections to institutionalized practices of power (Smith 1987, 1990, 2005). The overall purpose of our study is to employ an institutional ethnographic approach to explore how the social organization of an EPI clinic coordinates young people’s everyday “work” ¹ of recovery. Our primary question is “how do policy directives, administrative regulations, and professional philosophies organize the interface between clinic service providers and young people receiving treatment?” Specifically, in this article, we focus our exploration and critical analysis on how the ideology of medication adherence as a discursive frame organizes the work and recovery practices of an EPI clinic.

Importantly, our focus on medication adherence evolves from our formulation of the “problematic,” a methodological tool, which sets the direction of inquiry in an IE investigation. Generated in the data, during the course of talking to people and the problems they identify, the “problematic” or “disjuncture” is the contradiction between what is intended (governing version of reality) and what actually happens (is experienced locally) (Campbell and Gregor 2002; Smith 2005). In this study, the problematic is exemplified in 19-year old Bronwyn’s account identifying the tension between the rhetoric of EPI recovery principles and her experiential perspective. Bronwyn had been actively engaged with the EPI clinic for over four months. According to her and her mother, the clinic played a significant role in helping to get her life back on track. Yet, as Bronwyn suggests, the care she received may not have been centered on her needs and she hints at the pressure to take medication.

Interviewer: Do you ever call somebody at the clinic, when you are having a bad day or feeling off?

Bronwyn: I did, but they told me to come in for a meeting so I know if I’m going to call her (service coordinator), I will have to come in for a meeting and I don’t really want to . . . I have to go over everything I’m feeling and answer a bunch of questions, which I don’t mind but it’s a little much after a while.

I: Can you talk about that a bit? What would be more helpful for you?

B: Uh, just talking, I guess about . . . not necessarily about like uh . . . I don’t know, just talking about how I’m feeling and uh . . . not necessarily upping the medications. Cause, I don’t know, because after a while it feels like, oh I can’t ever have a bad day because it’s going to be like my medication’s not working.

As Bronwyn (and others) described, “somehow” the core recovery-oriented tenets of the EPI model of care (youth-friendly, client-centered, shared decision making) were not being fully realized in her experience of medication uptake. Explicating the “somehow” is the empirical aim of IE and our study.

In this article, we provide an ethnographic description of “what actually happens” in young people’s interactions with the service providers of an EPI clinic situated in Ontario, Canada. That is, we uncover the ways in which the institutional discourse of medication adherence coordinates clinic processes that impede service providers’ intentions to provide recovery-oriented care. We first outline the tensions inherent in competing interests of what is considered best for young people’s recovery in psychosis, culminating in the potential to evoke a “coercion context” (Sjostrom 2006). Following a brief summary of institutional ethnography and our methods, we describe in our findings how the prioritization of medication, grounded in the adherence discourse, unfolds in the clinic’s organization and everyday interactions with EPI clients. Our focus on clinic documents as material agents of regulation and coordination reveal the role of risk mitigation and accountability pressures in producing young people’s experiences of informal coercion. IE’s orientation to discovering the institutional complexes that shape people’s experiences, in contrast to conventional ethnography’s focus on obtaining group and cultural meanings, brings a novel understanding to how the disjuncture between the rhetoric of recovery-oriented care and its practice in EPI settings actually occurs.

Background

Recovery in Early Psychosis

In contrast to the deep pessimism held about the prognosis of psychotic disorders, such as schizophrenia, the emergence of EPI services since the 1990s offers a hopeful and optimistic view of recovery (McGorry 2015). However, recovery in mental health is not a straightforward concept. It is largely considered to be a conflation of the psychiatric perspective of recovery, referred to as clinical and social recovery from psychosis, and the person-focused definition of recovery in psychosis (Davidson and Roe 2009). The former emphasizes symptom reduction and a return to “normal” functioning, whereas the latter focuses on the process of learning to accommodate living with psychosis that involves building a meaningful life with hope and optimism (Stickley and Wright 2011). While EPI policy and service provision encompass both versions in their approach to comprehensive treatment that includes antipsychotic medication and psychosocial support, the former is an immediate and core pillar of EPI treatment. Despite the promising evidence of psychosocial interventions for better longer term outcomes, including relapse prevention (Alvarez-Jimenez et al. 2016), psychosocial treatments have mostly been assessed as an adjunct to medication (Morrison et al. 2012) and implemented less frequently than psychopharmacologic treatment (Durbin et al. 2014).

These diverging understandings of recovery are also reflected in young people’s reports of experiences with EPI services that reveal discrepancies between service users and professional views of recovery and treatment priorities (Hansen et al. 2017; Van Schalkwyk, Davidson, and Srihari 2015). A significant proportion of young people are more concerned with maintaining their social roles in school and work contexts than they are with symptom alleviation (e.g., auditory and/or visual hallucinations; Lam et al. 2011; Van Schalkwyk et al. 2015). Reports by young people indicate that antipsychotic medication can help them function better in the acute phase of psychosis. However, beyond this period, adverse side effects such as fatigue, lack of concentration, and weight gain can pose a barrier to recovery by compromising young people’s participation in everyday meaningful activities (Bjornestad et al. 2017b; Hansen et al. 2017) disrupting their sense of self and contributing to low self-confidence and increased perceptions of stigma (Lam et al. 2011). This paradoxical role of medication is rarely discussed with service providers (Hansen et al. 2017), indicating, as other studies have suggested, that shared decision making is seldom regularly implemented in practice (Griffiths et al. 2019). Furthermore, young people’s perceptions of service providers as being overly focused on medication adherence are contrary to their ideas of recovery (Bjornestad et al. 2017a; Gray and Deane 2016) and considered a contributing factor in disengaging with EPI services (Mascayano et al. 2021).

Tensions of Risk, Control, and Responsibility

For service providers, the delivery of recovery-oriented services in a mental health system focused on risk management, quality control, and efficiencies (Brown and Calnan 2013; Dobransky 2014; Morrow 2013) poses particular challenges due to resulting tensions around risk, control, and responsibility (Morant et al. 2015; O’Keeffe et al. 2018). Qualitative studies on users’ experiences and preferences in EPI services emphasize the importance of young people having choices and control over treatment decisions, enabling them to develop a sense of agency—essential to promoting recovery (Bjornestad et al. 2017a, 2017b; Grealish et al. 2013; Griffiths et al. 2019; Lam et al. 2011). Often these choices entail not wanting to take medication, as reflected in initially prescribed antipsychotic discontinuation rates of 72 percent during the first year of EPI treatment (Mustafa et al. 2013). Preventing relapse (defined variously as hospitalization, exacerbation of positive symptoms, etc.) via antipsychotic medication is a priority in EPI services (McGorry, Alvarez-Jimenez, and Killackey 2013). Hence, service providers are situated at the intersections of ensuring that EPI clients receive what is best for them according to evidence-based frameworks and the recovery approach (also grounded in evidence; Davidson et al. 2006), which endorses client risk-taking and clinicians’ tolerance of failure (Baker et al. 2013; Tindall et al. 2019). In addition, service providers are expected to build and maintain young people’s engagement in EPI programs (Tindall et al. 2019), further challenging their need to find a balance between the “duty to care” and the “dignity of risk” (Davidson et al. 2006). Furthermore, the provision of “care” in EPI requires involvement in several spheres of young people’s lives, such as family, housing, and school, whereby service providers assume roles that are both empowering and controlling (Rugkasa et al. 2014).

Compounding these tensions are issues of responsibility. L. Davidson and colleagues (2006) distinguish the roles and responsibilities of recovery and recovery-oriented care with the former being the domain of individuals with mental health challenges and the latter pertaining to service providers. Yet, these distinctions are not easily delineated. Presumptions that individuals with psychosis may lack capacity or insight to make treatment decisions can shift the weight of responsibility to clinicians (Morant et al. 2015). Paternalistic attitudes have been ascribed to service providers’ reluctance to assign responsibility to EPI service users, despite young people’s strong preference for personal responsibility (Pope et al. 2018). Critiques that mental health systems have abdicated responsibility from the state to the service user (Morrow 2013; O’Keeffe et al. 2018) highlight another dimension of the dichotomy of responsibility. In a recent study examining the impact of recovery-oriented policy over time, individuals diagnosed with a FEP described feeling abandoned by the recovery approach (O’Keeffe et al. 2018). The authors attribute this to the increased use of consumerism, tied to pressures to make services more acceptable and competitive, often at the expense of service user interests. Not accounting for and addressing the social, political, and economic inequities that individuals with psychosis are embedded in can make recovery less likely (Morrow 2013; O’Keeffe et al. 2018).

Informal Coercion

Considering these tensions and the confluence of “care” and “control” that characterize EPI service delivery, the potential to evoke a “coercion context” (Rugkasa et al. 2014; Sjostrom 2006) appears likely, although it has not been a topic of investigation within EPI settings. Nevertheless, informal coercion, which refers to a range of pressures and interventions aimed at promoting adherence to treatment (Szmukler and Appelbaum 2009), is reported as occurring with high frequency in mental health services (Hotzy and Jaeger 2016). Informal coercion is a controversial and confusing concept, generating dissonance and unease among mental health professionals (Morant et al. 2015; Valenti et al. 2015). Perceptions of which behaviors are informally coercive are subject to debate (Valenti et al. 2015), potentially contributing to under estimations of its use (Hotzy and Jaeger 2016). Despite service providers’ negative views of informal coercion, many acknowledge using it when they perceive it as being effective, when they feel pressure to apply it, and when its considered part of their role and responsibility (Valenti et al. 2015). In their systematic review of informal coercion, F. Hotzy and M. Jaeger (2016) conclude that both service users and clinicians hold somewhat positive attitudes about informal coercion if it is applied with respect for service users’ autonomy, high perceived fairness, and transparency in communication. Under these circumstances and when adherence to treatment is at stake, incentives and leveraging practices are argued as aligning with patient-centered approaches (Jaeger and Rossler 2010). Yet, studies also indicate that informal coercion is not helpful to service users’ mental health, particularly when antipsychotic medication is at issue (Norvoll and Pederson 2016) and is critical of its usage (Hotzy and Jaeger 2016) and potential to undermine trusting relationships, a key component of recovery-oriented care (Rugkasa et al. 2014).

At the core of the tensions we have outlined is the imperative to ensure that young people with psychotic disorders adhere to a regime of antipsychotic medication uptake. This focus on medication adherence in psychiatry has been linked, in part, to its position as an ideology of shared beliefs that views fidelity to a medication regime as expected and assumed, and that legitimizes health professionals’ ideas about how patients should behave in regard to its uptake (Trostle 2000). In the current study, we examine how the ideology of medication adherence discursively organizes EPI clinic practices and service providers’ interactions with young people in their work of recovery.

Institutional Ethnography

IE’s unique ontology sets aside attempts to theorize, categorize, or conceptualize people’s experiences, but rather views the social as people’s activities and practices and inquires how they are coordinated with those of others—a coordination discoverable through a process of exploration and explication (Smith 2005). Through ethnographic study that starts from the embodied experience of individuals, the IE researcher sets out to discover how people’s experiences are caught up in “ruling relations” that hook them into institutional action that arises outside of their experiential knowing (Smith 2005). It involves taking up a standpoint of actual people who occupy a specific location that provides the entry point into the social organization of their experiences and knowledge that otherwise may be invisible (Rankin 2017). In our study, taking the standpoint of young people with psychosis meant that our data collection and analysis were directed to understanding how the clinic’s practices within the organized frame of the “institution” impacted young people’s “recovery work.”

Moving beyond the boundaries of local experience allows researchers to tap into the broad social organization of people’s lives, thereby gaining access to the “institution,” understood in IE as a complex set of ruling relations that have governing functions (Smith 2005). Ruling relations may take the form of bureaucracy, administration, management, professional discourses, and so on. As the replicable and material representation of a discourse or ideology, texts are the agents through which generalizations and standardizations of people’s activities become interconnected with institutionalized practices of power (Smith 2005). In our analysis, we pay particular attention to the “ideological practices” that typically originate in a textual discourse where conceptualized forms of knowing replace the embodied knowing of the actual, such that only selected aspects of people’s experiences are made accountable according to the functions of the institution. These practices display the ideological character and schemata of the institution (Smith 1987).

Method

Setting and Sample

The study took place at an EPI clinic located in Ontario, Canada. The clinic was affiliated with a teaching hospital and situated in a nearby office building. Similar to other EPI programs in Ontario, the clinic served young people aged 14 to 35 years on an outpatient basis but followed a care coordination team rather than a case management approach to service delivery. Altogether 27 participants took part in formal interviews. Eighteen out of the total 21 clinic staff members agreed to participate via an invitation letter from the clinic director. These included 13 service providers—four service coordinators and two family support workers (all of whom were also nurses), two occupational therapists, two peer support workers, one drug counselor, one recreation therapist, and one psychiatrist—and five administrative/research workers. Most staff members had worked at the clinic since its inception six years ago. Criteria for accepting young people into the clinic included being between the ages of 14 and 35 and not having received treatment for psychosis for 12 months or less prior to referral. Young people attending the clinic and their family members/significant others were invited by their clinicians to take part in the study. Four young people (ages 19–31) who had been receiving services at the clinic from four months to two years and experiencing psychosis from six months to four years before entering the clinic were interviewed. Two women and one man were white and born in Canada. One man had emigrated from Africa 10 years ago. Family members (N = 5) included parents (two fathers and two mothers—all from different families) and a significant other. Of these participants, one was the mother of a young person who was interviewed and one was the significant other of another young person who was interviewed. Altogether 27 participants including staff, young people, and family members/significant others provided written consent to be interviewed. Young people and staff who were observed in formal meetings also provided written consent. Names and any identifying information in transcripts, field notes, and case studies were anonymized to protect participants’ confidentiality. Institutional Research Ethics Board approvals were obtained at the clinic’s and primary author’s affiliated hospitals.

Investigative Methods

Methods used in this study were ethnographic observation, in-depth interviews, and a review of texts. All fieldwork was conducted by the first author. Observations (over 110 hours) included one administrative staff meeting, three scheduled meetings between young people and their service providers, one art group, and informal talk/interactions that occurred throughout the clinic involving staff members, young people, and families. Data from these observations included descriptive and reflexive field notes with written recordings of the physical setting, events and activities, exchanges between individuals, the activation of texts, and reactions to the observed phenomena.

Formal in-depth interviews lasted 60 to 90 minutes. Interviews with clinic staff took place in their offices and focused on obtaining accounts of the everyday work they engaged in. The guideline questions were initially general, asking participants, “Describe what you do in a typical day at the clinic,” followed by probing for more details of their everyday activities as they unfolded. Young people and family members were interviewed at a location they chose which included a coffee shop, workplace, library, their homes, and one via telephone. They were asked to describe what they do when they come to the clinic, their interactions with clinic staff, and how they managed theirs’ or their child/partner’s psychosis. Interviews were audiotaped and transcribed verbatim by the first author.

Texts were identified as they arose during the course of the interview discussions. Participants described how the texts were part of their routine work process, including their purpose, source (e.g., hospital mandated), and to whom or where the texts would go to next. Texts included forms for referrals, assessments, consultations, consent, writing agendas and treatment agreements, as well as medical and procedural checklists. Case files of the four young people were also reviewed as well as relevant policy documents. These included provincial-level reports produced by the Provincial Forum and Task Forces (2002) on mental health reform and by the Ministry of Health and Long-term Care (2004, 2011) on EPI.

Analysis

The analytic objective in IE is to map the coordination of the setting, which accounts for participants’ experiences (Rankin 2017). Analysis began during the course of data collection in tandem with ethnographic observation, interviews, and textual analysis. As knowledge of the clinic’s organizational processes developed, it was verbally offered back to participants for confirmation or correction to ensure corrigibility of the evolving map of social relations (Devault and McCoy 2006). Subsequent questioning and probing was oriented toward uncovering institutional connections, located in the textual work processes of participants. Concurrently and subsequently to this phase, the analytic technique of mapping was used to visually assemble the interconnections of people’s work and the texts that coordinate their work with others. The resulting schematic representation enabled visualization of how the dynamic interplay of ongoing activities was produced and shaped by the day-to-day text-based work and local discursive practices (Smith 2005). The next phase of analysis involved multiple readings of the data (e.g., transcripts, field notes, case files, policy guidelines, clinic forms), in particular, reading for the social organization of young people’s recovery work, often accomplished by and discoverable in texts. This entailed directing our analytic focus to the interface between individuals’ activities and the ruling/social relations that shape them. We asked (analytically): “what does (our data) tell us about how this setting or event happens as it does?” (Campbell and Gregor 2002:85). We adopted the analytic strategy of organizing the data around “work” activities through a process of “indexing” (Rankin 2017). In the context of this research, work activities included “recovery work” with related subindexes of “taking medication,”“clinic appointments,”“goal-setting,” and “making decisions.” Particular attention was paid to how texts were linked into these work activities through their production, circulation, and activation. This process of indexing “linked work activities” involved writing the indexed pieces or “chunks” into “stories,” relevant to the problematic that supported the developing analytic account (Campbell and Gregor 2002; Rankin 2017).

Researcher Positionality

As a social science researcher, the primary author has conducted over a decade of qualitative research with young people and their family members in the EPI field. In alignment with IE’s ontology to remain outside the ruling relations (e.g., dominant perspectives in the literature) and oriented to people’s actualities and institutional processes, the researcher maintained reflexive field notes throughout the course of data collection and analysis. Other members of the investigative team are social and clinician scientists with expertise in qualitative methodology and institutional ethnography, including one member with significant research experience in the field of early psychosis.

Results

The analysis that follows traces how the institutional discourse of medication adherence coordinated young people’s work in their interactions with the clinic, such that the principles of recovery, as defined in the EPI policy documents, were disrupted. Our results are presented in three sections: (1) Prioritizing the Medical: Directing and Constraining Choice; (2) Relations of Informal Coercion: Enticing, Negotiating, and Taking Responsibility; and (3) Institutional Accountabilities: Linking the Everyday to the Extra-local.

Prioritizing the Medical: Directing and Constraining Choice

The prioritization of the medical focus on treatment as displayed in key EPI policy documents played a discursive role in the organization of the team structure and processes. The two policy reports on EPI (Ministry of Health and Long-term Care 2004, 2011) are critical to EPI service delivery and informing service providers’ work activities. The reports stress that services must be comprehensive, addressing both the medical and psychosocial dimensions of care, including assessment and treatment. Conducting physical and psychiatric/neurological assessments in preparation for medication treatment is described first, followed by the provision of psychosocial supports.

Medical and recovery team divide

Reflecting the ideological prioritization of the medical and the divide between the medical and psychosocial was a division in the multidisciplinary team, described by a program administrator as “recognized and not recognized.” Psychiatrists and nurses who served as service coordinators and family support workers comprised the “medical” component of the team. They focused on symptom and medication management as part of their care delivery and were the first team members to meet with young people. Thus, upon clinic entry, young people were immediately immersed into the discourse of medication adherence and became participants in the medical regime of testing and measures as they were prepared for medication uptake.

“Recovery” team members included occupational therapists, a recreational therapist, drug counselor, and peer support workers. Their role was to provide psychosocial supports to help clients meet their goals in regard to school, employment, and social activities. However, they could only be mobilized to meet and work with young people via a referral form from the medical team. The form was used to initiate young people’s engagement with recovery team members based on goals they had identified in psychiatrist and service coordinator discussions. Thus, medical team members ultimately controlled when and which recovery team member young people could see, thereby potentially constraining young people’s opportunities to choose.

Tensions of medication uptake and choice

The priority positioning of the medical team aligned with the clinic’s emphasis on medication uptake, which held implications for how recovery principles were enacted by service providers. As the first line of treatment, service providers viewed medication as playing an integral role in “correcting the chemical imbalance” caused by psychosis, thus diminishing the symptoms that impeded young people’s functionality. Young people’s reluctance to take medication was well recognized by clinic staff. They acknowledged the toll that side effects had on young people’s day-to-day activities as described by a peer support worker:

The biggest challenge is compliance with medication . . . that’s number one . . . usually after a couple of months, they’ve gained maybe 20 pounds . . . medication side effects, that’s the big one. Maybe not being able to work or not being in school. “Yeah, all my friends are in school. I’m at home, sleeping all day . . .” it’s really significant, I think.

In the face of these tensions, service providers strove to provide client-centered care and choice, which was evident in their frequent references to practices of employing these principles. For instance, they made a point of involving young people in “building the agenda” for each meeting, identifying the goals they wanted to pursue, and making decisions around medication. However, choices about medication were limited to which kind of medication to take. There was no space for young people to consider when or whether they wanted to include medication as part of their treatment plan. Nevertheless, granting young people choices within these parameters was viewed as progressive compared with other mental health settings and in alignment with client-centered principles as explained by one of the service coordinators:

Sometimes medications are used in a much different way . . . and here they are part of the decision-making. They get to decide. We go through the meds and they can decide what they prefer . . . Here they’re involved in their treatment and they design what their goals are and whatever and then we help them provide resources and support them.

Still, the authority of the clinic vis-à-vis the medical professionals and their focus on medication may have posed unintentional constraints to young people’s decision making. To ensure that clients were sufficiently informed “to make a good decision” about the most suitable medication, psychiatrists used charts and diagrams to explain the pros and cons of each drug. Although psychiatrists would suggest what they considered to be the “best choice,” young people had the final say in choosing which drug to take. Nevertheless, the assumption among young people and their families was that psychiatrists as medical experts know “best.” This was reflected in young people’s talk, including a young person who agreed to be observed as a participant in the study—“I do whatever they say.” And another client who resolved,

I listened to the doctor the first time and all the other times I listened to him and so far, they steered me in the right direction. So this time I’m going to uh . . . just keep on their good side and do what they tell me to do.

Relations of Informal Coercion: Enticing, Negotiating, and Taking Responsibility

The tensions arising from the EPI directives for service providers to ensure medication uptake, while following recovery-centered practices in the face of young people’s reluctance to medication, produced practices of informal coercion. Our term, “relations of informal coercion,” refers to a type of ruling relations identified in the data; an interplay of practices that coordinate service providers’ and young people’s actions such that power is exercised in invisible coercive forms identified as enticing, negotiating, and taking responsibility. In this section, we describe how relations of informal coercion coordinated clinic work activities intended to help young people adhere to a medication regime and participate in the program.

Enticing

Enticing is similar to the notion of “leveraging,” a form of informal coercion whereby service users perceive that the provision of support is contingent upon them accepting a prescribed treatment (Szmukler and Appelbaum 2009). Despite the recognized importance of psychosocial supports for young people, they were not usually permitted to engage only with the recovery team members. All services were linked to being treated with medication, which as described by the clinic manager was “the pillar of treatment” in this clinic. A peer support worker questions this practice in the following account:

You can have just the clinical but you can’t have just the psychosocial recovery stuff. I always thought it would make sense to be able to offer that, less dependent on the clinical stuff. Because some people might not want to take medication. They might not want to listen to what the clinical team . . . their advice or whatever. They might just want to come here and talk about what they did on the weekend and their goals around school, their goals around whatever it is.

However, for young people who were initially resistant or hesitant about participating in the clinic, psychosocial supports via connection with the recovery team were offered as a first line of treatment, as a strategy to entice them. Service providers acknowledged that the majority of young people’s goals fell into the realm of recovery as opposed to symptom reduction. Hence, the option of engaging with the clinic as a way to meet their needs that were most important to them was a powerful incentive and a way to “hook” them in, as described by the occupational therapist: “They’ll introduce one of us right away and they’ll kind of use that as the carrot to help with treatment and get people engaged in treatment.” Once young people were engaged with the process of working with the recovery team, the reasoning followed that they could be persuaded to begin a medication regime. In the following account, the psychiatrist explains the rationale for this approach.

We can’t make it about medication. We have to figure out whatever their goals are. If they want to go to school, if they want to work, if they want to see their friends, if they want to be permitted to stay at home. Or coercion, we don’t do that. We leave that to the parents to do that. And then inadvertently by trying to obtain these goals, good health has to be part of attaining these goals.

The psychiatrist’s reasoning—that without symptom reduction young people will not be in “good health” and thus unable to achieve their goals—is an assumption embedded in the discourse of medication adherence.

Negotiating

“Negotiation,” a term used widely in the clinic, suggests a mutual discussion and consensus of an agreement. Viewed within the IE framework, “negotiation” is a conceptual practice of power (Townsend, Langille, and Ripley 2003), obscuring the reality of what is actually taking place (Smith 2005). While instances of agreement were apparent with respect to goal setting, the requirement to take medications was nonnegotiable as stated by the clinic manager:

There’s always a choice about whether or not to have occupational therapy involved, recreation therapy, everything is optioned, other than if you’re in and the doctor thinks you need medication, then you need to be on medication.

In the service coordinator’s account below, we see how negotiation is managed with young people who are reluctant to take medication:

We try to negotiate as much as we can. “So you don’t like that, will you take this? Okay, will you take a slight reduction?” You know with the agreement that if you don’t sleep, you’re not doing as well. If your parents are a bit concerned you’ll go up. So we’re always negotiating with that. I mean it’s a developmental group that’s not used to being on medication. The first question is always, “How long do I have to be on them?” And it’s not an easy question to answer. You don’t want to say to somebody who’s very tenuously involved, “Well, you know we’re thinking you might need to take this very long term or for the rest of your life.” You know, you’re going to lose them. So we try to buy it in increments. Can you take this for six months? And then at six months we usually meet with our clients, their families. We talk about where they are. We have a big meeting. And we’ll meet with anybody they think is significant.

Young people are offered the possibility of a reduction in medication, but with the caveat that they are to increase the dosage should “symptoms” such as difficulty sleeping emerge or should their parents raise concerns about them. The intention to engage in a mutual discussion that sustains young people’s empowerment in their decision making becomes altered in the service provider’s account. Young people’s experiences are relegated to objective categories of symptoms. There appears to be little space to consider lack of sleep as being attributed to something other than what medications could fix. Second, classified as part of a “developmental group,” young people are subjected to their parents’ assessment of their well-being, which, according to the “agreement,” could invoke a dosage increase. Young people’s ability to ascertain their own emotional and physical state is subordinated, impeding the process of being listened to and understood. Third, withholding information regarding the possibility of having to take medications for the rest of their lives denies young people’s access to information that may affect their decisions, thwarting the EPI principle of “shared decision making.” Finally, negotiations with young people about medication often take place within the “big” meeting—a context with an imbalance of authoritative power—involving the care team, outside community agencies, and family members. By the time of the partnership meeting, family members have already received information about the importance of medication and the strong imperative to encourage their children to adhere.

Taking responsibility

In conjunction with negotiating treatment plans, young people are held responsible for adhering to the agreed upon plan. Accountability takes place at each appointment where they are asked to report on the progress of their goals and medication intake. Service providers expect that any potential disruptions to young people taking their medication were to be brought to their attention as described by a service coordinator below:

And this, the treatment agreement that we have between us is that we’ll make a plan at the end of each appointment. And our expectation is the plan will be followed unless there’s a problem, and we want to hear about it over the phone. And not next time be told, “Oh well I did do that increase but then something happened so I took myself off meds altogether.” So, we try to sort of address that kind of thing. We negotiate this way. Our expectation is it will be this way until we see each other again and then we’ll negotiate it again.

Texts are critical to the regulatory role that the institutional discourse of “taking responsibility” plays in young people’s interactions with the clinic. “Taking responsibility” emerged as part of Ontario’s mental health reform policies in the 2002 report, which states that in making informed choices, individuals should “assume increasing personal responsibility for their actions” (Provincial Forum and Task Forces 2002:28). Following from this, the EPI policy framework stipulates that young people have the right and the “responsibility” to be engaged in their own treatment (Ministry of Health and Long-term Care 2004).

In cases where the negotiated plan is faltering, a written treatment agreement form is introduced to young people. Its stated purpose is to “clarify everyone’s responsibilities” - meaning young people, service providers, and family members all share responsibility with regard to the treatment plan. The form is used when young people are deemed to not be following their care protocol, which, as stated by a service provider, could be because “they forgot or say they forgot.” Clients’ long- and short-term goals (medical, lifestyle, functional) are recorded, followed by spaces to add families’ and clinicians’ responsibilities to support these goals. As evident in the service coordinator’s account below, the form is used to make accountable young people’s actions or lack thereof:

It can put you back on track when you’re starting to feel that everybody’s side-tracked. But it can also be a way to make someone responsible for the fact that they are not using the care effectively. So, if they’re being disrespectful of time or resources or inconsistent [we try] to help them understand, “well you’re not getting better at the rate you’d like to get better because some of the recommendations that would make the most impact on your recovery, you’re not doing consistently.”

The authoritative language continues in the agreement form’s concluding statement (below) and includes signatures from the client, clinician, and family physician. A copy is given to young people and their family physician, and placed in their health file.

All parties have entered into this agreement in good faith and intend to follow through with their stated responsibilities. Failure to do so will result in evaluation of the agreement. At such time, partners may choose to end the partnership and/or change the agreement. Partners will evaluate this contract on _________.

The experiences and perspectives of young people are subsumed in this document, as is characteristic of regulatory texts (Smith 2005). There is no place to record and consider the particularities of why young people are not participating according to the treatment plan and/or the challenges they may be experiencing moving forward. Rather, the form functions as a record of accountability that can later support the clinic’s decision to retain or discharge young people from the clinic.

Another institutional record of accountability is the “no show” document, listing the dates young people missed their appointments and whether or not they contacted the clinic to provide a reason. Printed on colored paper and placed first in each client’s health file, it is positioned as an important document that can be easily accessed by service providers. A clinic administrator describes its “accountability” role:

When in fact, they do actually discharge somebody it’s because of missed appointments. They’re (young people) like, “Well, I didn’t miss that many.” They (service providers) come and grab the file and they’ll say, “Look at this. I can look at your file and see you missed an appointment on this day, on this day, and you didn’t call to let us . . . nothing.” And that stays right on top. Everything is filed chronologically but that one is always on top.

In addition to outlining to young people their negligence in fulfilling their responsibilities with regard to clinic attendance, the local form is sent to the family doctor. When the decision is made to discharge a client, usually after several missed appointments, a letter is sent to the young person, noting, “We want to work with you but we need you to attend your appointments.” Young people are advised that if they do not contact the clinic by a certain date, they will be discharged and their file closed. Although young people’s lack of responsibility appears to be at issue in the decision to discharge, we uncovered indications of an extended course of accountabilities tied to service providers’ work and discharge practices as we outline below.

Institutional Accountabilities: Linking the Everyday to the Extra-local

Tracing how the everyday activities of people within a setting are shaped by the extra-local organization of an administrative apparatus is a key element in an IE analysis (Smith 2006). In this study, we found that when young people missed appointments, this impacted the accountability measures reported to the hospital and to the Ministry of Health, who fund the clinic. Each month service providers reported the number of contacts they had with clients, which was used as a measure of efficiency. Discharging clients who were deemed as irregular attendees served to open up appointment spaces for potential clients who might be willing to adhere to a medication regime that involved regular visits to the clinic. Ironically, discharging clients is contrary to the EPI objective of keeping young people engaged in treatment. Clinic staff explained these discharges by citing the legal obligations for psychiatrists to see and monitor clients who were taking medications as a service coordinator stated, they couldn’t “just send prescriptions willy nilly.” Service coordinators also required regular meetings with young people to assist physicians by making assessments related to their physical health, mental status, and side effects of the medications they were taking. Without clients who require medical expertise, the everyday activities of psychiatrists and service coordinators that are heavily focused on medication management and its related assessments would be institutionally unaccountable. Yet, as evident in the psychiatrist’s account, it is young people who were held accountable for choosing not to take medications.

If we’re not prescribing medication and you’re not using our services then we don’t really need to have you in the program . . . if you can’t make use of our services then you are taking up a spot compared to somebody else who would make use of our services. So, it’s not contingent but it is an important part of what we do and at some point if people consistently refuse to take the advice that we make, they’re reflecting a bigger problem. So we do often end up parting ways not because of a black and white rule . . . more, it is a reflection of they’re not using the service in general.

Discussion

This inquiry opened with a young person’s account of how the clinic’s focus on taking medication supplanted her desire to talk about her feelings. Our investigation went on to discover how some principles of the EPI recovery paradigm—client-centered, collaborative, and autonomous—are implemented in the practice of medication uptake. Indeed, the disconnect between the rhetoric of these policy ideals and actual practices of medication management in mental health settings has been identified in previous albeit very limited research (Harris et al. 2017; Morant et al. 2015). Our analysis of the social organization of an EPI clinic supports and expands this finding by highlighting how the institutional processes shaped by the medication adherence discourse produce a disjuncture between service providers’ intent to provide recovery-principled care and some of the actual experiences of young people. Given EPI programs’ committed orientation to recovery, an unexpected discovery in our investigation was how the resulting disjuncture between clinical practice and EPI recovery principles was actualized in institutionalized practices of informal coercion and their link to institutional goals of safety and efficiency.

Informal Coercion in EPI

To our knowledge, this is the first study to identify processes of informal coercion within an EPI setting. In addition to “enticing,” which resembles “leveraging”—the most common form of informal coercion applied in psychiatry (Hotzy and Jaeger 2016)—we also discovered two other types of informal coercion, “negotiation” and “taking responsibility.” All were utilized to ensure medication adherence, the primary intention identified in studies examining coercion (Hotzy and Jaeger 2016). The assumption that the common application of informal coercion in routine practice as not being recognized by clinicians was apparent in this study (Hotzy and Jaeger 2016). Service providers did not indicate any discomfort or recognition of potentially coercive activities as emphasized by the psychiatrist, “Coercion—we don’t do that.” Nor did they display any acknowledgment of the advantage their authority as professionals could render in negotiations about medication (Rugkasa et al. 2014). This lack of awareness does not reflect service providers’ inattention to recovery centric practices. Rather, service providers were highly committed to ensuring that young people had choices where they could offer them (e.g., goal setting) and that they worked with them in a collaborative partnership, which involved sharing information about medication. Their inability to detect the coercive nature of some of the clinic’s practices around medication adherence is a feature of how ideology, in this case, antipsychotic medication adherence, shapes the practical organization of knowledge and power in the invisible processes that govern people’s everyday lives (Townsend 1998). The strength of psychiatry’s grounding in biological etiology and medication’s utility was similarly evident in D. T. Smith’s (2014) exploration of the disconnect between psychoanalytically trained psychiatrists’ purported resistance to medicalization and their actual prescribing practices.

Ideological Accounts and Institutional Risk and Efficiencies

In this analysis of the clinic’s social organization, we see how the practices grounded in the institutional discourse of medication prioritization produce informal coercion by generating a textual, objectified, ideological account of young people’s experiences (Campbell and Gregor 2002; Smith 1990). This account begins with the construction of a young person’s case file where textual forms and categories of medical measures and assessments (reflecting institutional interests) constitute a medicalized, objectified knowledge of the individual (Smith 1990). The account extends further, including categories of ongoing symptom identification, goal achievement and clinic attendance, such that young people’s needs and interests diminish and administrative decisions are made on the basis of a “textual reality” that supports the organizational view of what is best (Campbell and Gregor 2002). Although doing “what is best” also includes empowering young people to be autonomous agents, within the ideological account young people are transformed into measures of accountability that are linked, ironically, to practices of informal coercion.

Institutional accountability within mental health settings concerns minimizing risks (Brown and Calnan 2013) and ensuring the efficiencies and quality of service providers’ work (Dobransky 2014; Townsend 1998). The discourse of medication adherence and its relation to relapse risk does not allow any deviation for young people who may choose not to take medication. The risk of not adhering to medication protocols is managed in the clinic by implementing accountability measures. These measures (clinic attendance, medication uptake, goal achievement) are aimed to help young people maintain responsibility for their own health but ultimately, as this analysis shows, they are also designed to support and account for the work of professionals (Townsend 1998), sometimes to the detriment of young people’s participation in the clinic. Without spaces for young people to exercise risk, institutional dependency and appropriation of young people’s agency and responsibility occur (Smith 1997). This point is particularly salient in light of recent qualitative EPI research suggesting the importance of a sense of agency in facilitating recovery (Bjornestad et al. 2017a; Hansen et al. 2017).

Other research has suggested that young people are exercising agency (Bjornestad et al. 2017a; Morant et al. 2015) in their decisions (often undisclosed) to discontinue taking medication and/or disengage from EPI appointments and services. These choices also carry risks. Abruptly stopping medication without the clinical and social support provided by the EPI clinic can put young people at risk for the negative short- and long-term outcomes of untreated psychosis that EPI programs were developed to prevent (Galletly, Suetani, and Dark 2018). Ironically, the hospital’s accountability standards of efficiency, which operate to ensure that service providers’ meetings with clients are maximized, not only contribute to the production of informal coercive practices but also to young people’s discharge from the clinic. Within the institutional frame, the risk posed by not taking medication and meeting with the medical team appears greater than the risk of young people not engaging with the clinic at all. This tension is a function of how “the organization of psychiatric care serves to separate an individual from the contexts in which her actions arise as part of a situation in which others also act” such that “what she does appears as a behaviour attached to her and detached from her situation” (Smith 1990:92). Because the issues, challenges, and experiences of young people related to their actions around compliance do not fit into the categories and schemata designed at the central levels of the organization, they are not part of the textual realities that govern the decision-making processes (Smith 1990).

Links to Broader Ruling Relations of Neoliberalism

Locating medication adherence as a specialized and subordinate discourse mediated by the broader ideological “metadiscourse” of neoliberalism (Smith 2005:217) provides an expanded understanding of our findings. Neoliberalism is based on a political/market rationality where “individuals are taken to be free and autonomous consumers responsible for their own health, illness and distress” (Rimke 2016:5), while disregarding their social circumstances (Morrow 2013). Scholars engaged with Mad Studies argue that neoliberal themes of individualization and biomedical explanatory models of mental distress intersect to “responsibilize” individuals to “fix” their “disabled” or “broken brain” via psychopharmaceutical interventions (Berkhout 2018; Morrow 2013; O’Leary and Ben-Moshe 2019). Yet, as our analysis also demonstrated, individuals are held responsible to recover in ways that in actuality are largely defined and dictated by others (Myers 2015; O’Leary and Ben-Moshe 2019). Failure to successfully engage in prescribed treatments is deemed the fault of the individual, thereby “forcing an untenable choice between wanting treatment and rejecting the terms under which it is offered” (Berkhout 2018:178). Furthermore, neoliberal system-level practices of management, cost efficiencies, accountability, and performance measures inexorably tie professionals to medical-based modes of recovery (Morrow 2013). Our analysis of the EPI clinic describes how these broader, structural forces actually play out in the everyday lives of young people and service providers (Berkhout 2018).

Implications and Conclusions

This IE study presents an example of how organizational processes linked to extra-local medication adherence discourses and policy invisibly “act together to form the dependency-producing ruling apparatus of mental health services” that E. E. Townsend (1998) identified in her IE account of a community-based mental health setting over 20 years ago (p. 167). As Townsend noted how processes of dependence diminish the potential for empowerment, so too can the other components of recovery practices (e.g., client-centered, collaborative) be diminished as demonstrated within this EPI clinic setting. The fact that the routine organization of mental health services is continuing to produce this disjuncture despite the strong recovery policy rhetoric behind the emergence of EPI programs suggests the need for a radical shift in the EPI approach to medication. The shift currently being called for by some EPI researchers and clinicians concerns the move from a risk-averse culture where antipsychotic medication management is limited to promoting adherence, toward one that provides choices along a spectrum of continuation-discontinuation, postponement, or no medication (Alvarez-Jimenez et al. 2016; Bjornestad et al. 2017b; McGorry et al. 2013). Indications of this shift in perspective are starting to occur in emerging discussions of the need to consider alternatives to current EPI medication guidelines (McGorry et al. 2013; Morrison et al. 2012) while maintaining psychosocial strategies (Galletly et al. 2018) as well as in studies examining medication discontinuation (Hui et al. 2020). S. G. Berkhout (2018) goes further in her critical sociohistorical analysis of the emergence of FEP and suggests a more expansive shift to substantiate EPI’s claim of being the paradigm shift from mainstream psychiatry. She suggests a shift to “embracing multiplicity, engaging with critical disability and mad studies, making space for the tension between the desires for symptom remission and personal recovery and the normalizing practices within psychiatric research and care (which exacerbate power differentials).” (Berkhout 2018:179).

In this analysis, we have shown empirically how service providers’ intentions to deliver recovery-oriented care to young people attending an EPI clinic are disrupted by the prioritization of medication adherence and practices of informal coercion that are linked to institutional processes of risk mitigation and accountability. A limitation in this study was the small number of young people who participated in formal interviews. However, study rigor was ensured via the depth and breadth of data collection methods and participant positions. Although this study focused on the operations of a single EPI clinic, IE’s explicit attention to the social organization of a setting exposes the “generalizing character” (Smith 2005:42) of the institution that is present across multiple local settings. Thus, the discursive ruling practices we identified in this EPI clinic, as formed by the ideology of medication adherence and accountability measures, may produce similar tensions and experiences for young people in other EPI and mental health care settings. A shift at the system level of medication management to one that accounts for young people’s preferences and agency is an important step to the enactment of recovery principles in EPI clinics everywhere.