Professionals and Service Users Struggle As Research Collaborators

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A new article, published in Critical Public Health, examines how the relational dynamics between service users and professionals, when they collaborate on research,  are impacted by power hierarchies. The authors, led by Barbara Groot, coordinator of the Centre of Client Experiences in the Netherlands, advocate for an approach to collaborative research that embodies an “ethics of care.” They write:

“In hierarchical contexts such as psychiatric care and academic hospital settings that widely produce and uphold inequalities, dominant ‘logics’ can reassert the knowledge espoused by those who are already privileged. This is problematic because the complexity of problems in mental health care is such that it is not possible to solve them if mental health care organisations only focus on propositional knowledge as the ‘true picture of the world’ as we will not have access to different views to co-create out-of-the-box solutions. Moreover, such an approach would harm service users, and their potential future involvement in research.”

Increasing attention is being paid to approaches to research and understanding that emphasize collaboration between service users, experts, and researchers, such as Participatory Health Research (PHR). PHR is an umbrella term that broadly captures a variety of critical approaches that aim to dispel power hierarchies that are inherent in mental health care and research through the co-production of knowledge.

By privileging the voices of service users, PHR goes against traditional understandings of knowledge, which assume that only “experts” are able to speak to “objective truths, and does not value what service users, with their lived experience, can contribute to scientific research.” However, there are a number of groups of service users worldwide who are leading research, including research from “Mad Studies.” Also, research has emphasized how service users’ voices are key, with one study discussing the role they have played in developing approaches to psychiatric drug tapering. Other work has discussed how collaborative approaches have been effective in reducing hospitalizations and the use of psychiatric medications in mental health treatment.

In the current article, the authors reflect on the process of a research study, the ‘Good-Care-in-Crisis’ study, that they collaborated on and was grounded in PHR. The co-research team included individuals who had backgrounds in academic research as well as lived experience as service users in emergency mental health care, in addition to both formal and informal carers.

The ‘Good-Care-in-Crisis’ study worked toward identifying ways to improve service delivery in emergency psychiatric care, through exploring both the lens of professionals and service users. However, as the authors highlight in their reflective article, although they began with good intentions, the project did not end up being as collaborative as the researchers had initially hoped due to challenging relational dynamics and power hierarchies.

The authors discuss how service users’ voices were silenced in order to meet tight deadlines, which prevented co-researchers from working collaboratively on the conclusion, discussion, and summary of the study, which was instead produced by one team member who had academic affiliations and was the parent of a service user.

One of the co-researchers shared this reaction to the draft:

“I saw that a few sentences were written by someone who could not empathise with the position of the service user. . . . I felt dispossessed and unable to change these sentences. Who owns the final version? Who decides what words are chosen? Who has the power to decide the content of this most often read and most important part of the report [the conclusion]? It feels like X [the author of the draft] has all the power.”

Reflecting back on what they could have done differently, the authors believe that they should have asked for a deadline extension as a way to prevent voices from being silenced. They emphasize how diversity in knowledge needs to be respected and understood – particularly that of service users, who tend to be sidelined in favor of researchers whose knowledge is privileged – as a way to ensure that all voices are being heard.

The authors also observed how service users who had limited writing skills were excluded from fully participating in the development of the report. They described how a team member who had dyslexia was only able to give verbal feedback, and they were not able to adequately convey their knowledge to the rest of the team. Although creative measures were used in the study, such as songs, collages, and paintings, and were described in the final report, these items were not featured alone due to fears of some co-researchers that the research would not be considered “scientific.” Yet, being more inclusive of modes of expression outside of written text would allow for research that is itself more inclusive to all.

In their reflection of how the findings were discussed, the authors found that service users felt as if their lived experience was not valued or believed.

One team member recounted their experience:

“I felt that I was seen as a service user, not as a ‘whole person,’ and definitely not as an expert-by-experience . . . nor as a co-researcher. It was terrifying because that is my current identity, role, and expertise. As a service user and advocate of psychiatric patients, you need to prove yourself again and again, and show that you have distance from the subject of the study. You have to show that it is not only ‘your own story,’ but also the story of a variety of service users.”

Disconnection and difficulty in carefully attending to and listening to one another were present in the relationships between the professionals and service users on the team, which both groups of individuals felt and recognized. The authors recommend that research in the future include an equal representation of all of the perspectives involved.

Sadly, due to the critical nature of the report, it was ultimately not published in its original form due to fears grounded in previous experiences that powerful entities might sanction the organization, and that it could damage partnerships that could potentially effect change. The report was rewritten in a way that privileged the voices of the professionals, and led some team members to not feel adequately represented, with one member deciding to remove her name. The authors reflect how this event was challenging for team members.

The process of writing a reflective article about the power and relational dynamics that played out in the study proved to be healing for the group, who were able to mend their relationships. It also led to the development of a service-user-centered and -led group that intends to conduct participatory action research that aims to improve emergency psychiatric care.

Reflecting on the process as a whole, the authors discuss how epistemic injustice, which refers to being wronged in one’s capacity as a knower, was present throughout the study, as co-researchers felt undervalued, not worth listening to, and ignored. They highlight the irony and pain of the experience of epistemic injustice particularly during a study that was supposed to be co-produced by professionals and service users together. They discuss the sense of disconnection felt amongst research team members, which can lead to tension, resistance, and anger. They advocate for the practice of collaborative reflections on the relational dynamics among research team members during co-productive research, reflections that embody a “tend and befriend” approach that allows for a respectful coming together for solidarity, support, and advice.

The authors conclude: “This article reveals that the co-production of knowledge includes ethical responsibilities, and relational reflexive work can prevent disconnection and fragmentation. Care ethics is a source of inspiration to restore connections, and can generate energetic, creative, and innovative solutions that go beyond run-of-the-mill knowledge and ideas to better meet the needs of all service users in mental health care. The ‘tend and befriend’ option of response to crisis could give guidance for all involved in the co-production of knowledge.”

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Groot, B., Haveman, A., & Abma, T. (2020). Relational, ethically sound co-production in mental health care research: Epistemic injustice and the need for an ethics of care. Critical Public Health. (Link)

2 COMMENTS

  1. “In their reflection of how the findings were discussed, the authors found that service users felt as if their lived experience was not valued or believed.”

    This is such a common problem with “mental health” workers that I think they many of them must have been taught to NOT listen to, or respect, their clients. Certainly none of them understand the words, “Your drugs make me sick.”

    And my primary psychiatrist actually wrote in his medical records “not believed by doctor,” after asking what was new. And I told him I was going to be co-chairing a 250+ volunteer strong school art program. But, I eventually learned, that psychiatrist had gotten all his misinformation about me, from people who did not know me – which should be illegal.

    After escaping that nut job psychiatrist, I literally had to ask another group of “mental health” workers, “Does anyone here speak English?” At least this was embarrassing for some of them.

    And the idiot psychologist who handed me that conservatorship contract, under the disingenuous “art manager” guise. I started out trying to be polite, and just said I couldn’t afford to hire an “art manager.” No seeming ability to understand this basic concept, from that psychologist.

    So after he asked me to sign it again, I explained that I had a business degree, in addition to the art degree. And I said one of the first things they teach you in business school is to never ever … ever, ever … ever, ever, ever … enter into a business contract with someone who wants to take a percentage of gross. That psychologist then lied and said, “It’s the only way.”

    His harassment went on and on and on. Finally, two years after he’d officially announced I would be his “artist of the year” for the prior year. He told me I couldn’t get the award, unless I signed the contract. I said, “Fine, let’s just forget about it.” To which he responded, “Oh good, then you’ll sign the contract.”

    All of which, of course, pissed me off. So I asked, “What is wrong with you? I’ve told you many times I’m not going to sign your thievery contract. Stop asking.” Then I went and filed a police report.

    It’s my theory “mental health” workers must have been taught in psychology school that if you ignore and/or dismiss everything a person says, the person you do this to might start believing it is they who has a problem.

    But no, it is looney – and in too many cases, downright criminal – “mental health” workers who are the problem. They just can’t seem to garner insight into the reality that their “bible” is “bullshit,” and their drugs are neurotoxins.

  2. Part of the issue is tied to the nature of contracts (which to realize and understand, the importance of creating some form of written commitment to terms, though my efforts were framed to the idea of “whatever it costs, the price of your word is reasonable”). A little more difficult to keep when one’s mind begins to track differently, though to be able to shift into the unconscious through the ARTs…. will be beyond.

    The oddity and basis for estrangement that is occurring is tied to the nature of the boundaries by which bookkeeping has and is operating. Much can be hidden and the real costs of pollution, destroyed lives now requires an accounting, all the way into the highest levels of governance, both within the Governments, Businesses, Non-profits and Religions.

    How does one monetize the infinite errors made from “the treatments” or the discriminatory behavior that conveys “you are not as worthy to our operation”…. therefore…..silence? I do not think so! The capacity to generate dollars is not the totality of the human being. There is something else in the mix, which my hunch is that our experiences have provided us.

    Thanks for the insights, Someone else and to Ashley….

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