In a review published this month in The Lancet Psychiatry a team of researchers out of Hellesdon Hospital and Norwich Medical School investigate supportive features of the psychiatric diagnosis process from the perspective of providers and clients alike.
The researchers, Amorette Perkins, Joseph Ridler, Daniel Browes, Guy Peryer, Caitlin Notley, and Corinna Hackmann, recognize inconsistencies in provider understandings of best practices in communication and collaboration with clients, and recent efforts to integrate patient voice into the development of improved policies. They reviewed 78 qualitative studies to establish a picture of some of the preferred and problematic characteristics of the diagnosis delivery process.
Across stakeholder perspectives, Perkins and colleagues identified a discernable call for a movement toward an individualized, collaborative, and multifaceted approach to psychiatric diagnosis. Their results indicate that disclosure, openness, information provision, collaboration, timing, the stigma associated with a diagnosis, and the ultimate function of a diagnosis are some of the factors that determine overall satisfaction with the diagnosis process.
As the experience of receiving a diagnosis is so closely intertwined with one’s long-term relationship to that diagnosis, Perkin and team’s contributions have important implications. In their review, they disentangle unique features of diagnostician, client, and caregiver perspectives regarding the diagnosis process, including modality and quality.
“This review aims to incorporate the views of all key stakeholders, throughout the diagnostic process, across mental health conditions,” they write. “This broad scope offers an opportunity to gain a comprehensive and widely applicable understanding of the factors that influence serviceuser experience, through which we seek to reveal nuanced consideration of the experiential similarities and differences across contexts, such as diagnosis and service setting.”
The authors highlight that qualitative investigation is perhaps the most sensitive approach to the exploration of the experiences of providers and clients alike. Open-ended, non-judgmental, and unstructured review of preferences concerning best practices paint perhaps the best possible picture of the way things have been and the direction service delivery should move to support clients on both an individual and systematic level.
A large number of qualitative studies have examined service-user experiences with specific components of the diagnosis process, but often these studies have focused on specific diagnoses, and have been limited in their scope and perspective (e.g., looking only at views shared by a particular subset of stakeholders). Perkins review integrates preferences across multiple stakeholders and to examine an array of dimensions of the diagnosis process across a spectrum of diagnoses and settings.
It is not uncommon for individuals who’ve received a psychiatric diagnosis to feel skeptical, hurt, or angry about label they’ve been assigned. It is also common for individuals with psychiatric diagnoses to think that their experiences have been misunderstood and misinterpreted by others. Often, psychiatric diagnoses require clinicians to make judgments about the personal and interpersonal functioning of a client, sometimes through inference, deductive reasoning, and limited exposure to the client in question.
Past research has revealed that the voices and opinions of clients themselves are often overshadowed by clinicians’ preconceived notions, leading to a failure to incorporate the lived experiences of their clients in clinical decision making. Additionally, details of a client’s context unrelated to formal diagnostic criteria are sometimes inappropriately applied to the diagnostic process.
Qualitative studies reporting service-user (client), clinician, and caregiver experiences and perceptions of the diagnosis experience were included in this review. Their search yielded articles published in 13 countries, and materials satisfying inclusion criteria written in languages other than English were translated and included.
One theme that was present in all studies meeting inclusion criteria was the perception of psychiatric diagnosis as othering and as a stigmatizing label. The authors highlight that acknowledgment and discussion of the potential for stigma associated with diagnosis could serve to reduce fear among clients in a clinical setting. They suggest that initiating conversations around the implications of a label, providing sources for informational and social supports, and taking a constructive, person-centered approach serve to support clients’ clinical and diagnosis experiences.
An interesting difference between client and provider perspectives was identified concerning diagnosis disclosure. In some studies reviewed, providers and diagnosticians expressed hesitance to disclose diagnoses to their clients due to “concern about causing harm,” while many client frustrations stemmed from providers withholding relevant health information. Providers and service-users also expressed discrepant trends in perspectives regarding time-to-diagnosis. Service-users were inclined to report that their path to diagnosis was longer than they thought it should have been, while clinicians reported challenges stemming from the pressure to diagnose quickly.
Integration of diagnosis and recovery approaches would be more supportive of clients than diagnosis processes followed by treatment planning at a later date. Variation exists concerning client attitudes regarding the acceptability of a psychiatric diagnosis, but acceptability generally increases when a label catalyzes immediate support experienced as acceptable to the person receiving services.
“Receiving a mental health diagnosis can hugely affect service users’ lives, but research into how to best approach the diagnostic process has been limited. Our coproduced, evidence-based model can directly inform clinical training and practice, functioning as a reflective guide for clinicians. The model promotes a holistic understanding of individuals, which can empower service users, provide hope, and guide treatment.”
Above all, findings from the current study suggest a need for increased provider-client communication, honesty and openness, and for a diagnosis that is tied to a recovery-focused model. Psychiatric diagnosis requires clinicians to make judgments about the lived experiences of their clients, and inclusion and education of service-users can go a long way towards improving clinical outcomes. Improved communication also has the potential to repair trust compromised by many years of systematic abuse against those with psychiatric diagnoses perpetuated by paternalistic policies infused in clinical interactions.
Perkins, A., Ridler, J., Browes, D., Peryer, G., Notley, C., & Hackmann, C. (2018). Experiencing mental health diagnosis: A systematic review of service user, clinician, and carer perspectives across clinical settings. The Lancet Psychiatry. (Link)
Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.
How long will it take the “mental health professionals” to garner insight into the reality that all your DSM labels were confessed to be scientifically “invalid” in 2013?
This was a call, by the head of the NIMH, to get rid of all of the DSM stigmatizations. Wake up, “mental health professionals!” Stigmatizing people is the same thing as defaming people, and defamation is illegal. Wake up!
Here’s your medical proof that your “schizophrenia treatments,” the antipsychotics (aka neuroleptics), can create both the negative and positive symptoms of “schizophrenia.” The negative symptoms can be created via neuroleptic induced deficit syndrome, and the positive symptoms (including psychosis) can be created via antidepressant and/or antipsychotic induced anticholinergic toxidrome.
And Whitaker pointed out in his 2010 book that the ADHD drugs and antidepressants can create the “bipolar” symptoms.
And your antidepressants result in worse long term outcomes for those you’ve stigmatized as “depressed.”
Your DSM disorders are NOT real “genetic” illnesses. They are theorized, but incorrect, iatrogenic illnesses that can be created with your psychiatric drugs. Wake up “mental health professionals,” stop turning people into the “mentally ill” with your psychiatric drugs!
Especially stop defaming our “weakest members,” our child abuse victims. Today, over 80% of those you’ve labeled as “depressed,” “anxious,” “bipolar,” or “schizophrenic” are misdiagnosed child abuse victims. Over 90% of those you’ve mislabeled as “borderline” are child abuse victims.
You’ve been misdiagnosing child abuse victims with the “invalid” but billable DSM disorders on a massive scale for decades, because child abuse is classified in the DSM as a “V Code,” and the “V Codes” are NOT insurance billable DSM disorders.
Child abuse is a crime, not a brain disease. And distress caused by a crime is not cured with drugs. The primary function of today’s “mental health” industry is profiteering off of coving up rape of children, which is illegal. Wake up, “mental health professionals.”
“We’ll know our disinformation program is complete when everything the American public believes is false.” -William Casey, CIA Director 1981-1987
You were lied to, “mental health professionals.” You were miseducated by your universities, you were lied to by the pharmaceutical corporations, you were misled by those who made up the DSM. Everything you believe in is false. Wake up!
And how many psychiatrists are going to carry on a conversation with someone about how stigmatizing getting one of their wonderful labels is going to be for the person? Psychiatrists are in love with their labels and are never going to say anything bad about them.
Course not! Without their stigmatizing “diagnoses” psychiatrists would lose credibility and eventually social control.
Can anyone think of another area of medicine where a discussion of how we or the clinicians FEEL about the diagnosis has an impact on what the diagnosis it self will be? Something is VERY wrong with a diagnosis process that is so subjective that people’s opinions play a primary role in arriving at the diagnosis. Shouldn’t diagnosis be based on facts and objective observations?
I went to see a new shrink with a “diagnosis” of “schizo-effective disorder.” With a few strokes of his pen this wizard transformed my disease to a new one–“bipolar 2.”
Say I went to a cancer doctor with leukemia. Could she turn leukemia into melanoma on the spur of the moment without even running any tests? But–oh, yeah–there were no tests to prove I had “schizo-effective” to begin with.
‘Acceptability generally increases when a label catalyzes immediate support experienced as acceptable to the person receiving services’…almost a truism. I have seen ‘borderline personality disorder’ be strongly rejected if it was a ‘diagnosis of exclusion’ from services, and exactly the same diagnosis strongly accepted, even proudly promoted by the person diagnosed, if it led to increased services and acceptance.
Stephen Gilbert: in my last few years of (private) practice (2008-14) I used to talk about ‘labelling’ etc a lot. Too much, though, and the patient becomes uncomfortable.
Steve McCrea: yes, I think you do see this in other areas of medicine, albeit less marked. ‘Metabolic syndrome’ rather than ‘obesity’ or ‘type 2 diabetes’ might be an example.
Acceptance by whom? Not mainstream society, that’s certain.
As far as “greater services,” I’m sick of baby sitters (Day Treatment, Clubhouse, and other crap) that treat adults of average/above average IQs like MMR preschoolers!
If anyone is dumb enough to want to be segregated and infantilized, I guess it’s their funeral. But they deserve the facts ahead of time.
‘Acceptability generally increases when a label catalyzes immediate support experienced as acceptable to the person receiving services’ is almost there. I think we want to know what we can do to improve our experience of life and minimize the consequences of the ‘condition’ as well as catalyze support in doing so.
We might be able to think about general terms that help people position themselves on a recovery continuum in a way that gives them a sense of agency and progress. In my own version of this idea I use a four box matrix with quality/intensity of experience/distress on one axis; and impact on my story on the other axis… with a Hi | Lo rating on each. The four boxes are rest, rehabilitate, recover and rejuvenate. So, an episode of psychosis say would be Hi on the intensity scale and Lo on the story impact scale and rest is indicated… to get someone into a good space to consider their options. Hi intensity and Hi impact indicates rehabilitation, or that therapeutic work is required to work through issues in the mind. Lo intensity Hi impact shifts the attention to ‘my story’ and recovery in a social context where engaging with others is what brings results. Lo intensity Lo impact indicates the rejuvenation techniques such as mindful appreciation, to bring back enjoyment. The ‘my story’ model I use has five simple themes for self evaluation. Instead of labeling the person this idea is intended to bring attention to the type of effort which will show progress along a path to recovery and connect that to sense of agency. In each of the four R’s we can identify success factors, to talk solutions rather than problems – so much on mental well being is in how we phrase the outcomes we are trying to achieve. Current diagnostic labels tend to box us in to a static concept (supposedly contained/suppressed by an Rx) instead of helping move us along. I talk about it here in the context of hearing voices where we can act to create better experiences and prevent the recurrence of psychosis: https://youtu.be/GHXbduh9RRQ
“Current diagnostic labels tend to box us in to a static concept.”
I could not agree with you more on that point, Greggieboy.
I have long been expressing my profound concern and even alarm that MadInAmerica continues to publish articles, essays, etc., that help to reify psychiatric diagnostic categories and labels, when it has been proven compellingly that (1)psychiatric diagnoses are NOT scientifically grounded — indeed, they are not even reliable, so they are even farther from being valid! (2)giving someone a psychiatric diagnosis does NOT increase the likelihood that their suffering will be reduced, and (3)giving someone a psychiatric diagnosis (even those that would seem to be the least severe) exposes them to a vast array of risks of harm. People interested in learning more about this can have a look at psychdiagnosis.weebly.com, at https://www.amazon.com/They-Say-Youre-Crazy-Psychiatrists/dp/0201488329/ref=sr_1_1?ie=UTF8&qid=1526958314&sr=8-1&keywords=they+say+youre+crazy and at https://www.amazon.com/Bias-Psychiatric-Diagnosis-Paula-Caplan/dp/0765700018/ref=sr_1_1?ie=UTF8&qid=1526958361&sr=8-1&keywords=bias+in+psychiatric+diagnosis as well as many essays in the Psychology Today blog I wrote for some years.