Bridging Subjectivity and Science: Lived Experience Expands Mental Health Research

Philosopher Anna Bergqvist champions the role of narrative and lived experience in mental health science.

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A new paper by Anna Bergqvist, an Associate Professor of Philosophy at Manchester Metropolitan University, makes a philosophical case for both the moral and scientific value of the inclusion of lived experience in mental health research.

This approach, she suggests, does not detract from the scientific objectivity of the discipline but rather enhances it by integrating a relational understanding of patients’ experiences. Her work, intersecting aesthetics, moral philosophy, and the philosophy of psychiatry, brings a unique perspective to the understanding of mental health, challenging the traditional boundaries between subjective experiences and objective science.

Bergqvist writes:

“The mistake, I argue, is to think that a commitment to listening to the patient voice in the process of perspective taking implies a threat to ‘objectivity’ in clinical practice and the very concept of evidence in the philosophy of science more generally.”
Instead, she argues “that narrative experience and ‘patient perspective’ should be understood as an ongoing dynamic partnership working between the different stakeholders’ knowledge perspectives.”

By highlighting the importance of lived experience and challenging the notion that its inclusion reduces scientific objectivity, she opens up new avenues for a more inclusive and relational approach to mental health research.

In her paper, Anna Bergqvist advocates for a transformative approach to mental health research, emphasizing the importance of lived experience and challenging traditional views, prioritizing individual autonomy and objective clinical expertise.

Bergqvist’s argument centers around the concept of ‘narrative particularism,’ a framework that places patient narratives and experiences at the heart of mental health research. Moving away from the traditional biomedical model, which often prioritizes clinical expertise and standardized treatment, her approach calls for a dynamic partnership between patients and clinicians.

Her narrative particularist framework champions a relational and co-creative methodology, focusing on patient values and experiences as central to understanding mental health. This shift towards a more patient-centric approach signifies a departure from older models of medical ethics, favoring a dynamic partnership between patient and clinician where personal narratives play a crucial role.

A key aspect of Bergqvist’s paper is its challenge to the entrenched belief that patient experiences undermine the objectivity of mental health research. Contrary to this, she posits that a relational understanding of patients’ experiences is crucial for a comprehensive view of mental health.

Bergqvist addresses the evolving landscape of medical epistemology, where narrative understanding and individualized care are becoming increasingly important alongside evidence-based practices. Bergqvist further advocates for moral particularism in mental health care — a principle that considers each patient’s unique context and circumstances in clinical judgment.

The paper also explores the complexities of shared decision-making, stressing the significance of self-ownership, personal identity, and responsibility in the recovery process. This aspect of Bergqvist’s work underscores the importance of collaborative care, seeking a more democratic and equitable form of psychiatric treatment.

Bergqvist proposes that understanding and incorporating the patient’s voice into mental health research enriches scientific validity and clinical practice. She challenges the notion that including patient perspectives diminishes objectivity, instead advocating for a relational process devoid of an ‘outside’ perspective.

Additionally, Bergqvist delves into the asymmetry in stakeholder voice and power between ‘expertise by experience’ and professional training in psychiatry. She emphasizes the importance of recognizing the normative aspect of knowledge in psychiatry to avoid falling into value relativism or constructivism. The paper also highlights the connection between lived experience and the psychiatric significance of the personal self, touching on topics like agency, selfhood, and personal identity in psychiatric diagnosis.

Bergqvist concludes with a call for an integrated approach to mental health care that respects diverse perspectives and emphasizes ethical communication in clinical practice.

Her work paves the way for a more inclusive and empathetic approach to mental health, recognizing the value and complexity of individual experiences in the field.

 

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Bergqvist, A. (2023). Shared Decision-Making and Relational Moral Agency: On Seeing the Person Behind the ‘Expert by Experience’ in Mental Health Research. Royal Institute of Philosophy Supplements, 94, 173-200. doi:10.1017/S1358246123000243 (Link)

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Justin Karter
Justin Karter
MIA Research News Editor: Justin M. Karter is the lead research news editor for Mad in America. He completed his doctorate in Counseling Psychology at the University of Massachusetts Boston. He also holds graduate degrees in both Journalism and Community Psychology from Point Park University. He brings a particular interest in examining and decoding cultural narratives of mental health and reimagining the institutions built on these assumptions.
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35 COMMENTS

  1. I am left somewhat confused by the mix of words suchs as: patient’s narrative, lived experience, medical care, medical research, epistemology, perspective, moral value, scientific value, etc.

    Particularly because philopsophers, in my opinion, are notorious for refusing to define the concepts they use in a clear maner. They, as far as I saw, refer to Focault’s use, Plato’s use, Kant’s use of words as concepts, without ever, or enough, defining them, the just sit and write a consensus of words as a defined concept. One simple paragraph sort of thing…

    Like, wiggly games of using words leaving room to subjectivity in the use of philosophical concepts. And sometimes acrimonious disagreements of what, for example equality for all, really mean.

    Which brings me to my most puzzling catch of the review: How could the use of another’s perspective diminish objectivity?. In general, beyond the kerffufle of psychiatry.

    Would asking the populace that has not read Plato’s republic, Hobbes’ Leviathan or Keane’s The Life and Death of Democracy, diminish the objectivity of the word as concept “Democracy”?.

    Isn’t just asking thus a reflection of the dismal state of the field of Psychiatric Epistemology?.

    More views into a phenomenon, I ignoramously think should bring more objectivity, not less. More eyes, more views into a phenomenon should bring more objectivity not less. More meassurements: optical, infrarred, X-ray, brought more objectivity?, to the knowledge of out of this Earth objects that are not otherwise directly accesible?. Or am I wrong on that too?.

    Isn’t that the way philosophy studies concepts?. What democracy was in ancient Greece, in the Roman Republic, in middle ages, if at all, Europe. In 17th century England, after the French Revolution, etc. Without, actually defining clearly what democracy is, in a way that covers all those democratic models. Aware it is not possible perhaps…

    Which I guess in a way, answers partially my puzzle: it’s a philosophical paper, no objectivity required… to speak about objectivity, of course… but let me guess: meta-objectivity?.

    On top, psychiatrical phenomena being intersubjective, taking into account patient’s perspective and lived experience, I guess it would bring more intersubjectivity not more or less objectivity.

    Listening only to the pros views, would bring “more objectivity”, in the sense of less intersubjectivity, following, I guess the implied argument. Which to me, just by asking, sounds almost oxymoronic. The trivial way to increase objectivity that way is: just follow the APAs creed, reduce the number of subjects contributing to intersubjectivity of mental disorders.

    Being psychiatric phenomena intersubjective, not objective, there being no microscope, no espectrophotomer, and no weighting apparatus to objectify mental disorders…

    Even then, as such, the word objectivity in mental disorders, does sound to me oxymoronic. There can’t be objectivity in the intersubjective research that characterizes psychiatry, which deals with intersubjective phenomena, not objective ones. Or am I wrong?.

    And it seems it mixes clinical practice and clinical, called “scientific” research, in a way that obfuscates the value, moral and scientific of the patient’s view.

    The patient’s values, preferences, even prejudicies, since the 20th century have been fundamental in the practice of medicine outside psychiatry. More so in the 21th century.

    I knew, and know of no physician, outside psychiatry and some neurologists that double down as psychiatrists, that treat a patient, let alone diagnose one, against patients wishes, preferences and values.

    Does anyone do?, please do share, I might be idealizing the rest of my colleagues…

    Now, for research is another matter, even then: No means No.

    And research subjects are more protected, in principle, against will violations, extortion, threats, etc., than your average Joe in the consulting office.

    And in some practitioner’s perspectives, patients are clients, and “he who pays, calls the shots”, so, not only dismal, but abismally dismal…

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  3. Who ever told these people they had “scientific objectivity” in the first place?

    I love how a new industry has been born of professionals speaking about the need to listen to people with lived experience. The fancier the vocabulary gets, the more it screams “we will never listen to people with lived experience. Our job is to speak for them.”

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  4. It really burns me up that while I lost my time energy and health while this system chewed me up, every one of my “natural supports” believed that the psychiatrists and therapists actually were listening to me, considering my situation in context, empathizing,…instead of slapping the worst label they had on me, drugging me up, locking me up, threatening, mocking and abusing me and then blaming me for “not getting well”.

    Because that’s a thing that would make sense, if you claim to be engaged in helping a person, you treat them like a human being and not a diagnosis, not a chemical imbalance. But nothing in this nightmare of a system makes any sense…and the claim of scientific objectivity is completely ridiculous. Yeah, don’t worry, you won’t lose scientific objectivity because you never had it in the first place.

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    • Why should anyone trust an organization with a history of disregarding the people it claims to “help”? The very idea of thinking they’re in a position to speak for people they’re trained to objectify reveals the institutionalized cruelty and grandiosity that’s the lifeblood of their “profession”. The “mental health system” isn’t about compassionate assistance, it’s about taking advantage of people having a hard time while applauding and rewarding its practitioners whose recent acknowledgement of people’s lived experience is their way of continuing to profit off people’s misery because you can be sure they’re already trying to come up with ways of rewording people’s lived experience to suit their own objectives.

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    • This is ONE OF THE STUPIDEST reviews I’VE ever read.

      AND WHY IN THE HELL does ANYONE think they need a so-called “practitioner” to validate what they’ve gone through??? But wait—I think get it—some people buy into the mistaken notion that paying “clinicians” to listen to them makes their experience more significant when nothing could be further from the truth.

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  6. “Bergqvist, A. (2023). Shared Decision-Making and Relational Moral Agency: On Seeing the Person Behind the ‘Expert by Experience’ in Mental Health Research. Royal Institute of Philosophy Supplements, 94, 173-200. doi:10.1017/S1358246123000243 (Link)”

    I clicked on the link and was taken to a wrong article.

    Steve, is there a way to ask Justin Carter about the right link? I searched for this article, and got this link:

    https://www.cambridge.org/core/journals/royal-institute-of-philosophy-supplements/article/abs/shared-decisionmaking-and-relational-moral-agency-on-seeing-the-person-behind-the-expert-by-experience-in-mental-health-research/BD8C2DBB7137D44DCBC5477E3EBB4128

    It is behind a pay wall.

    Also I would like to know from Justin whether he has a free full text link to share.

    Thanks!

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  8. I wonder if this is the sort of “scientific objectivity” the experts are afraid of losing:

    This is from 2022.

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9567085/

    “Results suggested BPD patients are viewed by mental health professionals as ineffective, incomprehensible, dangerous, unworthy, immoral, undesirable to be with, and dissimilar to the mental health professionals. Moreover, disgust propensity and the pathogen component of disgust sensitivity were associated with stronger negative attitudes towards BPD patients.”

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  9. Who decides which ‘patient’ values and perspectives fit this narrative particularist framework? Power differentials within capitalism exist behind vales of moral ideals and positional privilege. To be kind, and we need to be, the author’s moral intentions are clearly admirable, however ideals must challenge inequalities of representation within academia, health care (private and public) and survivor voice. Scientific objectivity is too often about purity and symmetry directed towards targeted recovery quotas and KPIs, so by nature seeks conformity perspectives which add value (valuable £ outcomes). The commodification of life on earth should be the big issue raising the alarm. On democratic frameworks, we, including the author, and scientific community, need to be united for seeking perspective solutions to capitalism. It has infected our health care systems, influenced diagnostic criteria and is creating the climate abyss. Many people feel powerless to do anything. We need leadership here!

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  11. I’m very confused by all of this. Are psychiatric survivors being encouraged to speak, or not? Or, only if they’re willing to give the benefit of the doubt while experts discuss and philosophize and call for more research? Or maybe I’m allowed to speak as long as I don’t come across too angry — I should try not to sound borderline, because seriously no one wants to hear from those “people”?

    I wonder if the author spoke to anyone with lived experience prior to writing about the need to listen to people with lived experience. I wonder if the author has read any personal narratives from psychiatric survivors, here or on other platforms. If so, did she notice an overtly hostile response from people who seemed to want the survivor to remain silent…a response that almost without exception included accusations that the person sharing their story was somehow being “dangerous” and was more than likely mentally unstable (the subtext being: mentally unstable people shouldn’t speak about their experience)? There is a whole list of other accusations that are leveled against someone who dares to share their lived experience in a way that doesn’t protect psychiatry/excuse its many huge failings. Why are people who share their lived experience still being attacked? Does the system that harmed them – or the faction within that system that purports to want change – see that survivors cannot speak about their own lives without risking being attacked again? Does it owe them any protection? Does it owe them anything? Or should those people just be quiet and trust that the MH system will become humane at some point because the professionals are working on it? Do survivors have a role in reforming the system, in the view of people who work in the system and purport to want reform?

    Clearly, people realize that there is a whole closetful of fraud, malpractice, abuse, greed, human rights violations, eugenicist ideology, etc., behind the door of the closet labeled “fear of losing scientific objectivity”?

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  12. “By highlighting the importance of lived experience and challenging the notion that its inclusion reduces scientific objectivity, she opens up new avenues for a more inclusive and relational approach to mental health research.”

    Imagine if anthropologists were studying a band of gorillas and said they didn’t want to pay attention to the lived experience of the gorillas because doing so would wreck the anthropologists’ scientific objectivity. Imagine if they said, “We don’t want to know what the gorillas think, or how they feel, or what they think of the experiments we’re running, or how they feel about being microchipped and sedated when necessary. We don’t want their input on our gorilla classification system, which we worked hard to invent and have spent decades revising. We’d really prefer if it, for the sake of science, we had as little direct interaction with the gorillas as possible. We know the gorillas have things they’d like to say to us about their own experience, but for the sake of the science, we can’t listen. The science only works when we’re objective, and objective means keeping as much distance from the gorillas as possible and only observing them in the lab, never in their natural habitat.”

    Psychiatry purports to have knowledge of those they deem mentally ill (the”mentally ill” being the object of study) but is supremely threatened by hearing what that group has to say about anything. Weird.

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  14. Here’s my question for Anna Bergqvist – are they actually doing any advocacy work beyond just writing this paper? Yes, this paper matters, but is it actually going to lead to any additional funding or respect for lived experience input into research and service design? Is she actively demanding and trying to hold colleagues accountable? Are they pushing on her own Manchester Metropolitan University to have more co-produced research. Are they pushing on other universities? Maybe they are. Maybe they feel threatened and at risk if they speak out too much. Will Anna be incarcerated for speaking out, because as a lived experience advocate, I have. And at some point, while these sorts of studies are important, I’m tired of people like Anna sitting behind desks writing papers while myself and colleagues are given literal NOTHING to support our self-advocate efforts.

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  15. Any attempt to reduce the device between the heaters and their subjects should be applauded but I think your approach is too radical to be useful. May I suggest ,research into why patients recover, would be more effective. Remember doctors treated scurvy for years before the discovery of vitamins so let’s focus on making patients better rather than drugging and labeling them.

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