Despite Focus on “Inclusion,” Mental Health Peer Support Workers Face Marginalization

A recent study highlights the tensions and limitations of the dominant notions of "inclusion" within mental health peer support research.

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A recent study published in Qualitative Health Research reveals that despite the growing focus on inclusion in mental health peer support, these workers often experience exhaustion, slow rates of change to oppressive values and practices, and ongoing workplace exclusion.

Peer support work, which emphasizes solidarity, mutuality, and self-determination, has been increasingly incorporated into mainstream mental health practices. However, the study’s authors argue that multiple versions of inclusion are produced through socio-material practices, including research, with varying effects on peer support workers and mental health practices.

The study was conducted by Aimee Sinclair, Sue Gillieatt, Christina Fernandes, and Lyn Mahboub from Curtin University in Australia. They write:

“As Mad-identified scholars and allies, unsettling inclusion sits uncomfortably, given its status of moral imperative, achieved through significant social justice advocacy. We do not wish to undermine valuable advocacy that has seen inclusion brought to mainstream political agendas, the progressive effects of inclusionary measures, and the work of scholars who are continuously working toward social justice. It is this work that enables our analysis. However, we believe unsettling enactments of ‘inclusion’ is a discomfort worth sitting with to continue moving towards achieving dignified and socially just mental health services.”

The consumer/survivor/ex-patient (C/S/X) movement has long advocated for the right to self-determination and the value of experiential knowledge in addressing mental health issues. These advocacy efforts have contributed to de-institutionalization, recovery-oriented approaches, and the involvement of mental health service users in service design, delivery, and evaluation.

The researchers employ a post-structural analysis to examine how inclusion is produced. To do so, they adopt Carol Bacchi’s “What’s the problem represented to be?” (WPR) approach to explore how mental health research produces versions of inclusion, examining the implications for peer support workers and mental health practices.

By applying the WPR approach, the study analyzes how mental health research on peer support produces specific knowledge, assumptions, and problems of inclusion and peer support work. Through this lens, the authors present three problematisations of “inclusion” within the literature: inclusion as assimilation, integration, and co-optation.

Assimilation

Assimilation refers to the process by which individuals conform to the dominant culture or system in order to be included. For example, in the context of mental health peer support, this could mean that peer support workers are expected to adopt the language, values, and practices of the dominant mental health care system to be recognized as legitimate providers of care.

Inclusion as assimilation is a perspective that views the employment of peer support workers (PSWkrs) as a political move without sufficient evidence of efficacy and effectiveness. Proponents of this view argue that high-quality trials are needed to determine whether peer support interventions can resolve psychiatric symptoms or improve patient self-management.

This problematization is mainly driven by the dominant positivist paradigm in medical research, which focuses on gathering evidence about a singular reality. As a result, clinical measures in randomized controlled trials and meta-analyses have become the gold standard for measuring peer effectiveness. Unfortunately, these measures often decontextualize distress and support, neglecting social factors influencing outcomes.

The assimilation view of inclusion requires PSWkrs to adopt ways of thinking and working that align with psychiatric authority, producing clinical outcomes. This may lead to PSWkrs becoming “mini-clinicians,” focusing on individual identity and experience markers, such as diagnosis and history of accessing services, to support psychiatric outcomes. This approach often excludes alternative practices that challenge psychiatrization and leaves dominant mental health practices unquestioned. Inclusion as assimilation can involve PSWkrs having limited control and may implicate them in oppressive practices associated with treatment.

Integration

The second problematization of including Peer Support Workers (PSWkrs) in mental health systems involves treating inclusion as a foregone conclusion. These texts highlight the unique and valuable contributions of PSWkrs and the importance of maintaining the authenticity of peer support (PS). However, the problem is framed as a technical issue of overcoming barriers to inclusion, which can be related to PSWkrs, PS work, or external factors.

In this positioning, PSWkrs are often problematized as lacking the disposition or skills for mental health work, leading to suggestions for training and accommodations. Similarly, PS work is complicated due to factors like emotional stress, role confusion, and lack of professional standards. Therefore, solutions often involve making PSWkrs more like existing mental health workers through training, standardization, and credentialing.

External problems include stigmatization by non-peer staff, unsupportive work environments, and poor compensation. These problems are attributed to a lack of organizational readiness, with solutions focusing on more explicit policies, procedures, and job descriptions.

Thus, inclusion is constructed as integration, where aspects of PSWkrs’ lived experiences are valued, but the alternative epistemology they bring is often excluded. This approach to inclusion can conceal and reinforce oppressions and injustices, as limiting experiences are reduced to technical rather than political problems.

Co-optation

Co-optation refers to the process by which the dominant system or culture absorbs and repurposes elements of a marginalized group to maintain power and control. In the context of mental health peer support, this could involve the co-option of peer support practices and language by the dominant mental health care system, potentially undermining the original intentions and values of peer support.

In this section, the authors highlight the gradual shift in PS from a grassroots, user-led approach to a more institutionalized, professionally-led one. This shift is seen as problematic, resulting in a loss of integrity and the devaluation of lived experience expertise. The authors also critique essentialist narratives of co-optation, which can sideline the diversity and dynamic nature of PS and inclusion.

The literature on PS often fails to engage with issues of race, gender, class, sexuality, or diagnostic differences, which has led to the continued production of predominantly white, western, and ‘sane-performing’ PSWkrs. This exclusionary approach ignores the long history of mutual aid and expertise within marginalized communities and the differential effects of taking up a peer identity. The authors call for critical reflection and engagement with the experiences and expertise of marginalized groups.

Lastly, the analysis suggests that the co-optation problematization can erase dissent and complexity within the PS movement. The authors emphasize that PS has always existed within politics and that individuals are continually shaped by various forces. The authors encourage a more nuanced understanding of the psychiatric and mental health fields and the workers within them.

The authors argue that current constructions of inclusion may contribute to oppressive tensions experienced by PSWkrs, who are caught between wanting to practice in anti-oppressive ways and needing to exist within a system that readily excludes them. They suggest that researchers should engage in “self-problematization” to critically examine their own role in producing and reinforcing these notions of inclusion.

To move beyond current limitations in the concept of inclusion, the authors propose exploring how various inclusionary forces impact peer support in different contexts and across intersections of gender, class, diagnosis, and other axes of oppression. They suggest considering the productive potentials and limitations within both “inside” and “outside” engagements with mental health systems rather than focusing on an “authentic” form of peer support.

The study underscores the importance of engaging with uncomfortable reflexivity to enable more emancipatory possibilities regarding inclusion and peer support. The critical analysis of inclusion in mental health peer support highlights the need for further examination of the political effects of research and the potential for more inclusive and socially just mental health services. In addition, by recognizing and critically examining the different forms of inclusion, researchers and practitioners can work towards fostering a more inclusive and equitable mental health care system that values peer support workers’ unique perspectives and contributions.

The authors conclude:

“We have highlighted how dominant notions of ‘inclusion’ produced through research have potentially delimiting effects for PSWkrs and leave oppressive power relations unexamined. An alternative enactment of ‘inclusion,’ constructed predominantly through Mad/survivor research, provides the potential to move us closer to social justice outcomes if we continue to engage with its limitations and do not allow it to solidify. This critical reflection on the role of research in the production of ‘inclusion,’ whilst often uncomfortable, is integral for ensuring, as researchers, we are aware of the problematic effects of our own well-intentioned efforts and, thus, how we might continually adjust our practices such that we move closer to achieving justice and equality for individuals with lived experience of distress and/or psychiatric oppression.”

 

 

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Sinclair A, Gillieatt S, Fernandes C, Mahboub L. Inclusion as Assimilation, Integration, or Co-optation? A Post-Structural Analysis of Inclusion as Produced Through Mental Health Research on Peer Support. Qualitative Health Research. 2023;0(0). doi:10.1177/10497323231163735 (Link)

10 COMMENTS

  1. It is a “problematization” to me, that English seems no longer to be good enough. Using a lot of dense language to say precious little is concerning. The USA is undergoing an extreme culture war, and I am disappointed to see that only Marxist “liberation” ideologies are taking over here. Anyway, that’s my sense. I’m having this discussion in many places right now as “DEI” (which I consider better spelled as DIE, it’s a Marxist Trojan Horse), and CRT (also a Marxist Trojan Horse) flood our institutions. I had hoped MIA would remain somewhat balanced, but it seems that we all have to be ‘liberated” from our extreme “oppression” in literally the most FREE country in the world. The country millions of people are willing to literally die to get into. I’m fine with people having varying political perspectives, that is as it should be. But something is changing here. Mad In America used to have a specific message, and because of that simple message, it has achieved great things. But apparently now, that message is not good enough. I have thought long and hard about commenting as I have watched this site veer, the fact that I have had to think so long, and so hard, about expressing an unpopular opinion tells me that something is amiss. All political viewpoints should be welcomed and roughly half of this country is NOT down with this “problematization” of Marxist ideology.

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  2. This article uses complicated words, but what it says is both obvious and obviously wrong.

    Of course workers will be badly treated in mental health services; that’s unavoidable, because their main purpose is to control the range of what’s “normal” and keep it broadly the same. Evey mental health system will control the definitions of “health” and “illness” so it can impose its values, and you won’t be allowed to work in a service unless you perform in a compliant way, to provide an example to others. It’s naive to think you can go in as a “peer” and affect it from inside; that change happens only from the top down, and those at the top are corrupted completely.

    The article is wrong to “highlight the need for further examination”; that’s a self-serving academic thing to do. The mental health system cannot be fixed, because it is harmful by its nature, much like the penal system, and also academia. We will be “emancipated” only when we free ourselves from control and manipulation, particularly from these institutions.

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  3. The use of the term “inclusion” already marginalizes the peer support workers. Who gets to decide if they are “included” or not? Obviously the REAL workers, who are by definition more important than the “peer workers” because they can “include” them or not at their whim.

    Reminds me of the concept of “shared decision making,” where clinicians are “encouraged” to “take the views of their clients into account” before making decisions. Obviously, the people being asked to “allow” their clients to have a “voice” are already trampling the rights of clients to true informed consent, and asking them nicely to please ask my opinion before you decide what to do to me is hardly a viable solution.

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  4. I also have concerns about this type of dialogue concerning peer support workers. While it is true that the roots of peer support for behavioral health issues are co-mingled with social justice issues, today I think we should focus on this quote from the founder of the National Association of Peer Supporters, Steve Harrington: “Simply put, peer support occurs when people in a particular circumstance reach out to help others in the same or a very similar circumstance. It is the act of a person or persons reaching out to others to help them deal with life challenges.”

    For me peer support is the social support so often missing in our medication-skewed approach to dealing with life challenges and human suffering. It occurs when someone who is thoughtful about their own life experiences, sometimes a peer support worker, comes to the aid of others, when they may be struggling. Even better in my view, is when peer support means being part of a small group of individuals, often led by a peer support worker, who help and encourage each other. A group can enhance the impact of peer support by offering a variety of helpful perspectives along with a lot of caring and compassion, something too often missing in today’s world.

    I agree that the mental health industry often doesn’t recognize the power and importance of this simple aid to people in distress. We focus too much on structuring what in earlier times was the way people in smaller communities lived and assisted each other. We also see too many places where organizations are trying to avoid the cost of “a human touch” especially if it is being delivered by individuals who rely on life experience rather than professional training.

    I can only hope that over time, peer support workers’ extraordinary value will be recognized, by focusing more on providing excellent social support and less on why they can’t. We are not about to change the paradigm of the whole behavioral health industry, so as peer workers often say, “we need to change the things we can control.” In this case that means what we do as peer workers. That will count for a lot.

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  5. I’d be swiftly canned, since I know of methods my superiors likely wouldn’t, and would likely use them if I weren’t exposed to contiuous supervision and observation, as I’d quickly grasp the basics and proper needs and uses for proper orthomolecular treatments.

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