Need for a Feasibility Trial
In recent pandemics, social distancing, isolation, and quarantine have precipitated depression and anxiety [1,2]. It is expected that isolation and physical (social) distancing due to the COVID-19 pandemic will lead to similar consequences as confined people are detached from their loved ones, deprived of personal liberties, and devoid of purpose owing to altered routine and livelihood. These consequences will probably be amplified by the economic recession and the ensuing increase in unemployment and poverty. Moreover, those with pre-existing mental illness might suffer from limiting interpersonal interactions that are central to their management, as well as reduced access to helpful but “nonessential” (and thus often canceled) psychiatric services [3]. Successful use of quarantine and distancing as a public health measure requires us to reduce, as much as possible, the negative effects associated with it [4].
In response to this situation, this feasibility study of a trial offers a transitional measure of online social support for people suffering from (1) psychotic disorders or (2) anxiety or mood disorders, and to assess its effects in terms of both personal-civic recovery and clinical recovery. Transitional peer support groups will be organized and led by trained peer support workers (PSWs). PSWs are persons with first-hand lived experience of mental health problems or illnesses and who are further along in their own recovery journey. Upon training, they can provide supportive services when hired to fill such a paid specialty position, as now recommended by recovery-oriented best practices guidelines [5,6]. Indeed, recovery focuses on how individuals can have more active control over their lives (agency) [7]. It is characterized by a search for the person’s strengths and capacities, satisfying and meaningful social roles, and mobilizing formal and informal support systems. Peer support has thus become one predominant feature of the recovery paradigm and, as per their title and function, PSWs specialize in peer support.
A Problem to Be Addressed: Measuring the Effects of PSWs on Recovery
In Canada, the incremental economic burden of mental health problems or illnesses (MHPIs), which incorporates the use of medical resources and productivity losses due to long-term and short-term disability, as well as reductions in health-related quality of life, is estimated to be more than $50 billion per year. By calculating all health services utilization, long-term and short-term work loss, and health-related quality of life and their dollar valuations, Lim et al [8] have concluded that over one-half was due to reductions in health-related quality of life. Decreasing pain and suffering, overcoming disability due to MHPIs, and helping Canadians affected by MHPIs to recover, instead of solely treating them for their MHPIs, is a major public health issue, even more so in times of isolation and quarantine in the midst of a pandemic since social support is known to be an important factor that can affect mental health [9]. This is why, along with other sociopolitical or historical considerations, recovery is now the official leading paradigm in the transformation of mental health systems and policies in Canada [10], as is also the case in the United States [11], the United Kingdom [12], and elsewhere in the world, and as promoted by the World Health Organization (WHO) [13].
As a social movement echoing the historical claims of other social movements since the 1960s and 1970s, including the antipsychiatry movement, the origins of recovery in mental health are now fairly well documented [14,15]. Yet, tensions persist about the meaning and ownership of recovery [16,17]. Generally speaking, there are two major portrayals of recovery [18,19]. One is akin to the notion of cure in the field of physical health; clinical recovery refers primarily to the reduction of psychiatric symptoms through a curative approach to the disease using psychopharmacology and psychotherapy. With this first axiom of recovery, the role of the ill person is mainly to follow the instructions of professionals and comply with prescribed treatments. On the other hand, a more personal-civic axiom of recovery promotes the empowerment of the persons, their ownership and authorship of their own history, their autonomy, and their independence in living free from any labeling diagnosis [20]. Recovery is not the disappearance or the eradication of symptoms but a redefinition of oneself in light of lived experience as a person who managed to live with an MHPI, and who found a new balance in life toward well-being and quality of life, with or without enduring psychiatric symptoms or treatment.
The experience of living in recovery is particularly useful for sharing among peers who are coping, and/or have coped, with similar issues. The commonality is the struggle and emotional pain that can accompany the feeling of loss and/or hopelessness due to the consequences of MHPIs, rather than in relation to a specific symptom or psychiatric diagnosis. This commonality might also be in relation to sex and gender considerations [21,22], more than in relation to specific conditions. Peer-to-peer communication is a widespread phenomenon (eg, in groups like Alcoholics Anonymous [23] or Al-Anon for families [24]). Access to PSWs has been widely advocated internationally by service user researchers [25,26] and by professional organizations [27,28]. Provision of peer support has been identified as a fidelity requirement for recovery-orientated services [11,29] where the PSWs bring a focus on health, recovery, and quality of life, rather than on illness and disability [30]. They provide the mental health service users a validation of their lived experience and unique experiential knowledge for facilitating the reclaiming of their lives as full members of the community and for remaining so [31]. The Mental Health Commission of Canada emphasizes that patients living with MHPIs who interact with PSWs “will not only feel the empathy and connectedness that comes from similar life experiences, but that this interaction also fosters hope in the possibility of a recovery that includes health, wellbeing, quality of life, and resilience” [32]. Since 2005, recovery and PSWs have also been at the core of Mental Health Action Plans in the province of Quebec [33,34]. Yet, we still do not know how a recovery-oriented mental health organization that would include PSWs as staff members would improve recovery from the perspective of persons living with MHPIs.
Principal Research Questions
The principal research questions are whether our novel PSWs-facilitated online intervention will have an impact in terms of (Q1) clinical recovery potential and (Q2) personal-civic recovery potential. We also question (Q3) how these potentials can be impacted by the COVID-19 pandemic and (Q4) how the lived experience of people in recovery can be mobilized to cope with the situation. Finally, we also explore (Q5) how sex and gender considerations can be taken into account for the pairing of PSWs with service users beyond considerations based solely on psychiatric diagnoses or specific MHPIs [35]. We aim to collect data for a future randomized controlled trial (RCT) [36] by clarifying a certain number of remaining uncertainties and by detecting an effect that would be specifically attributable to transitional peer support as facilitated by trained PSWs. We will thus consider scientific reasons, processes, resources, and management in preparation for a more definitive trial. Indicators of feasibility will include recruitment rates practices, participants and facilitators, as well as feasibility and retention rates in the study protocol [37].
Why a Feasibility Study of a Trial Is Needed Now
The main problem that this feasibility study of a trial addresses is that the scientific literature on the attribution of a specific effect of paid PSWs, in terms of clinical and personal-civic recovery potentials among persons living with psychotic disorders and/or anxiety and mood disorders, is sparse. Indeed, although we already know that patients served by case management teams with PSWs have shown greater treatment engagement, more satisfaction with their life situation and finances, and fewer life problems than compared to case management alone [38], it is the effect of teams with PSWs that has been mostly evaluated. It is thus possible that such effects could be attributable to mental health professionals, other than PSWs, and who would have endorsed recovery as a guiding principle for their own professional practice. We may know who PSWs are, but we do not know much about what PSWs do that would be complementarily different to these professionals. This has the adverse potential of hindering the harmonious integration of PSWs into professional teams when their role is not well accepted or understood, which was sometimes the case, for instance, in France, and as suggested by Demailly (and Garnoussi), who observed a possible rejection phenomenon of PSWs [39-41].
Evidence From the Literature
In 2014, Lloyd-Evans et al [42] published a systematic review and meta-analysis of RCTs of peer support programs, defining peer support “as a way to promote recovery for anyone who has experienced mental ill health, irrespective of diagnosis.” Their systematic review and meta-analysis included trials intended for people with psychotic disorders. They found that programs varied in content, group, or individual delivery; face-to-face or internet-based delivery; degree of support from local mental health services; and extent of provider training. Such limitations make it difficult to recommend the practice on a scientific basis rather than as a response to the otherwise very legitimate social and political demands of the mental health service users’ movement. Several programs focused on individual self-management, as shown by Johnson et al [43], and Milton et al [44], who reported that 64 (29%) of 218 participants in the intervention versus 83 (38%) of 216 in the control group were readmitted to acute care within 1 year (odds ratio 0.66, 95% CI 0.43-0.99; P=.044). This “individualistic” approach to recovery and focus on readmission to acute care as a primary outcome has been criticized by some advocates of service users’ involvement in mental health research [45] and who see this as a practice of silencing and of masking the epistemic injustice [46] that people living with MHPIs have collectively and historically suffered in traditional psychiatry [47].
A quasi-experimental group design was used by Felton at al [48] to compare outcomes of patients with psychotic disorders (n=104). They reported that among these patients, those served by teams with PSWs demonstrated greater gains in several areas of quality of life, and overall reduction in the number of major life problems experienced. This might be due to team dynamics and culture, not necessarily to the supportive presence of PSWs toward these patients. Then, with regards to anxiety and mood disorders, Pfeifer and colleagues [49] also conducted a meta-analysis, examining the effect of peer support on clinical recovery (symptoms), but not on personal-civic recovery. They included professionally led peer support groups and found that voluntary peer support complementary interventions from nonprofessionals were superior to usual care in reducing depressive clinical symptoms. They also conclude that despite potential economic advantages and the multiple mechanisms through which these could help patients with anxiety and mood disorders, such programs have been limited in their availability and integration with formal mental health treatment. This is currently the case in the province of Quebec, where it is planned that there would be PSWs in teams dedicated to the treatment of psychotic disorders (but not in teams dedicated to treatment of anxiety or mood disorders). Psychotic disorders affect about 1% of the population. Studying the potential impact of PSW-led online group interventions for much more common disorders like anxiety and mood disorders, in conjunction with formal mental health treatment, could benefit 10 times more people. Indeed, Statistics Canada reports that 10.1% of Canadians ≥15 years of age declared symptoms that met the criteria for anxiety (4.7%) and depression (5.4%) [50].
Search for Existing Trials
As part of the development of a new training program for PSWs, a joint undergraduate program of the Department of Psychiatry and the Vice-Deanery for Health Sciences at the Faculty of Medicine of the University of Montreal, we systematically searched the literature for examples of evidence-based PSWs interventions we could replicate and train our students to conduct. A recovery-oriented group intervention by PSWs that we became familiar with over the years is the Citizenship Enhancement Project [51]. Derived initially from research on mental health outreach to persons who are homeless [52], this intervention was designed to address the specific community and social inclusion needs of persons with MHPIs and comorbid criminal justice histories, as well as to respond to the high rates of criminal recidivism for this population. Indeed, drawing from social science theories that propose social and civic participation as a measure of one’s involvement in society [53], our engagement framework [54] emphasizes the importance of opening up opportunities for participation to persons at risk of marginalization. An RCT was conducted in the United States in 2012 to compare outcomes for participants receiving this intervention, along with the usual public mental health services, to those receiving public mental health services alone. Analysis of baseline, 6-month, and 12-month interviews showed significantly reduced alcohol and drug use and significantly increased quality of life for the intervention group compared to the control group [55]. In close collaboration with the Yale Program for Recovery & Community Health that initiated the Citizenship Enhancement Project, with patient research partners we have successfully translated and transposed this model into the Projet Citoyen at the Institut universitaire en santé mentale de Montréal (IUSMM) [56]. In both places, the role of PSWs consisted of facilitating discussion groups on issues of social and civic participation. Three key differences make it necessary to further evaluate the effect of the PSWs’ group intervention specifically. Firstly, involvement in the Criminal Justice System within the past 2 years is an inclusion criterion for the former, not for the latter. Secondly, another inclusion criterion for the former is that it was intended for people living with psychotic disorders and concurrent substance abuse disorders, therefore not including people living with anxiety or mood disorders, as was the case with the Projet Citoyen. Thirdly, the Citizenship Enhancement Project and Projet Citoyen have been evaluated, but not in terms of personal-civic recovery with a pre-post research design. In brief, searches for existing meta-analysis of clinical trials for PSWs’ group intervention confirm that no previous randomized trial has compared the outcomes of a group intervention led by PSWs combined to formal mental health treatment in terms of clinical and personal-civic recovery for people living with psychotic disorders, and/or anxiety and mood disorders.
How Results Will Be Used
A result of PSWs’ online group intervention efficacy in terms of both clinical and personal-civic recovery potentials for people living with psychotic disorders, and/or anxiety and mood disorders, would privilege the role of PSWs in recovery-oriented peer-to-peer support groups. The study will impact the conceptualization of recovery- and citizenship-oriented mental health care, clinical training, and in mental health treatment resource allocation and for informing nonspecialized clinicians as well as the public. Indeed, an embedded observational and qualitative study performed with postgraduate students and patient research partners will improve the understanding of the experiential knowledge translation and knowledge sharing dynamics among participating patients living with MHPIs and among PSWs. Decision making will also be informed for the definition of a university mission for all psychiatric facilities of the University of Montreal’s Integrated University Health and Social Services Network (IUHSSC). This network advances the integration of the university mission of care, teaching, and research, by facilitating knowledge translation and technology assessment in order to improve access to evidence-based care. This is a vast integrated network of health and social services organizations and public establishments with a university vocation, including those psychiatric facilities where PSWs do their final internship before being eventually hired. The territory of this network represents 46% of the population of the province of Quebec and the three Integrated University Health and Social Services Centers affiliated with the University of Montreal are partners of this study. Since 2015, the IUHSSC organization is the gateway to the public service system where the Quebec population can turn in case of health problems and/or psychosocial problems, including MHPIs. Due to their university affiliation, their mission is to contribute to academic training as well as to the development and dissemination of scientific knowledge. The study will inform the PSWs’ training program by generating a better understanding of the specific effects attributable to the PSW group intervention.
Previous Works
In 1994, Daniel Fisher, a person with lived experience of several psychiatric hospitalizations prior to becoming a psychiatrist and renowned author and speaker, released an empowerment model of recovery based on the principles that emerged from the lived experience of persons living with MHPIs. Among those principles is personhood: “we are full human beings and deserve respect and full citizenship” [57]. More recently, Davidson and colleagues suggested that, as a sense of empowerment and control over one’s life emerges, people in recovery may start to demand the same rights and duties as other citizens [58,59]. Supporting people living with MHPIs in exercising their citizenship (which refers to personal confidence/hope, willingness to ask for help, goal/success orientation, reliance on others, and no domination by symptoms) might be a precondition for their recovery, not an eventual reward contingent on the person overcoming his/her disability first. Rowe and Davidson [60] have thus suggested that research on clinical recovery, often invoked to illustrate personal recovery’s different meaning and mission, also inspired the mental health community with its findings that people with chronic MHPIs often do “get better” in the traditional clinical sense. Personal recovery transferred the hope these findings gave to the conviction that people could recover a full and meaningful life even without achieving a clinical cure or remission. Rowe and Davidson [60] state:
Finally, recovering citizenship means that while recovery is replenishing its social roots, it also reminds citizenship, with its emphasis on the person’s rightful place in society, of the person’s unique journey to citizenship and life as a citizen.
Social interaction, which is essential to community membership, involves the development and maintenance of reciprocal relationships between members of a community, each of whom are, in principle, equal cocitizens to each other [52,61]. Thus the notion of collective citizenship, as suggested by Quinn et al [62] when applying this model to the domain of mental health, where people are often treated in individualistic ways, kept apart separately, and experience marginalization. The collectivistic dimension is imperative in promoting participation, empowerment, and social change for people living with MHPIs.
Indeed, the Mental Health Commission of Canada considers that “involvement within community” is an integral component of a definition of personal recovery. We thus combined the Recovery Assessment Scale [63] and the Citizenship Measure [64], because the former does not include any item on this civic participation dimension, as does the latter. We first translated these tools in French using a translation-back-translation method [65], then found statistically high convergent validity between them [66]. Patient research staff have administered these tools to 845 French-speaking IUSMM patients living with various MHPIs. We found statistically significant male-female differences, suggesting that males felt more independent and self-confident but also more isolated than females, especially in relation to the intention to seek and receive help. Such results in terms of sex differences [67,68] were discussed in class among PSW apprentices to inform and guide their future practice. The current proposal will allow us to further explore the influence of sex and gender in the pairing between PSWs and peer-supported service users. We questioned if this pairing could be favored by taking into account such sex-gender considerations, rather than solely on a diagnostic basis (eg, should a patient living with psychotic disorders only be paired to PSWs living with the exact same condition?).
A criterion for being recruited as a PSW will be to have successfully completed at least 180 hours of training within the microprogram (eg, undergraduate courses PST1000-Recovery & Global Health + PST1001-Ethics of Recovery for PSWs). We have published on the “reversed flipped class” approach in use in this 1-year-long microprogram where senior PSWs take turns as recovery experts and teaching partners, and by which patients/students learn from each other in a peer support–like atmosphere by reflecting on their lived experience of recovery [69-71]. This system, including the evaluation of the final internship in clinical environments affiliated with the University of Montreal, was adapted from the Canadian Medical Educational Directives for Specialists (CanMEDS). The CanMEDS are commonly used by medical boards in Canada and elsewhere to create competency-based medical training programs [72]. With permission from the Royal College of Physicians and Surgeons of Canada, we have adapted the CanMEDS for the training and supervision of our PSWs [73,74]. PSWs will be recruited and hired in the form of service contracts through the Association des pairs aidants du Québec because the job title of PSW is not yet recognized in the nomenclature of job titles, labels, rates, and salary scales of the health and social services network. Since they cannot hire them directly under this job title, several Quebec institutions like the IUHSSC organization use this mechanism to have PSWs in their mental health teams, as recommended in the governmental Mental Health Action Plan. The Association des pairs aidants du Québec is a company legally constituted under Part III of the Loi des companies du Québec. It is a social enterprise self-managed by and for PSWs and consumers (peer-run agency), grouped within a professional association in order to improve, promote, and trade their specific expertise and knowledge. Peer-run agencies are staffed and operated completely by self-described mental health consumers who provide services such as self-help, activity groups, and drop-in groups. Yanos et al [75], as well as Miyamoto and Sono [76], have shown that involvement in such services was associated with better community adjustment, the use of more coping strategies, and a greater proportion of problem-centered coping strategies. PSWs recruited by job posting to facilitate transitional peer support groups will not themselves be participants in this study. However, they will have a specific mandate because they will generate certain data analyzed in the context of this study, in particular with regard to the recognition, valorization, and use of the experiential knowledge of persons in recovery, particularly, but not limited to, to their response and coping strategies under the COVID-19 pandemic.