Survey on Emotional Distress and Mental Health Diagnosis: An International Campaign to Include “Regular People” in the Conversation

Lois Holzman, PhD
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For the past several years, the East Side Institute for Group and Short Term Psychotherapy and the Social Therapy Group have conducted surveys on mental health topics on the streets of New York City. (See Holzman, 2015, “A Report on Community Outreach: Lay Opinions on Emotional Distress and Diagnosis.”). We wanted to learn from ordinary people how they were being impacted upon by the pervasiveness of the biologically-based diagnostic model—broadly speaking, as with the media and ad campaigns of the pharmaceutical companies, the attempt to reduce stigma with a “mental problems are an illness” public service campaign—and on the local level in their visits to their physicians and local clinics, and meetings with the teachers, counselors and social workers at their neighborhood schools. What did they think they needed? What would be effective ways to involve people in learning about alternatives and, for those who wanted more choices, in shaping new approaches in collaboration with us and other like-minded professionals?

These surveys are among the community-based and community-building activities of both organizations—one a non-profit education, research and training center; the other an affiliated group-oriented therapy center—that develop and promote cultural and community-building approaches to human development. By community-building we are referring to the social-emotional-intellectual benefits of diverse groupings of people creating community.

Both organizations host dozens of public forums, seminars and workshops open to all at their offices and at community organizations throughout NYC. In addition, the Institute hosts a number of international study and training programs and a bi-annual conference, Performing the World.

The street surveys conducted in 2013 and 2014 and a 2014 follow-up public conversation serve as a pilot study for the current Survey on Emotional Distress and Mental Health Diagnoses launched online in May 2015. Our aim is to create an international campaign to give the general public the opportunity to share their thoughts on emotional distress and mental health treatment and diagnosis.

As researchers and practitioners, we are deeply troubled by the continuous narrowing of options available to people experiencing emotional difficulty. We believe that a variety of mental health approaches should be available to people from all walks of life and that we need to involve ordinary people in new kinds of conversation on this topic.

New conversations are clearly needed. From reviewing existing public opinion polls of mental health issues (of which there are few), it is clear that our survey is unique in a number of ways. First, it does not presuppose an illness model (nor any other understanding of the experience of emotional distress). Second, it is open-ended to allow people to reflect and tell how they think and feel about the issue in their own words rather making forced choices from options provided to them. Third, it is designed to reach people, not a specific population or category (e.g., “those in treatment,” “mental health professionals,” “psychiatric survivors,” etc.).

More specifically, our literature search, while not exhaustive, has turned up surprisingly few opinion polls on anything to do with mental health/mental illness at all—and none that do not use conventional illness labels like schizophrenia and depression (putting the horse in the cart, so to speak) and/or ask people to choose between reductionistic causes. This is the case whether the purpose of the study is to discover correlations between lay people’s beliefs about mental illness and the treatment options they favor, or to examine whether a disease view of mental disorder reduces stigma (apparently, it does not).

Disorder and illness are presumed. The field of vision is already defined. The options are chosen for us, not unlike US polls on electoral politics that offer Democrat or Republican as the only options—despite the fact that 42% of the American electorate identifies as independents, eschewing the political parties.

For example, Kuppin and Carpiano (1996) reported on a study of lay beliefs about the causes of disorders in which respondents were to choose between biological and upbringing explanations of schizophrenia and substance abuse in a hypothetical case—the assumptions being that 1) schizophrenia and substance abuse are universally agreed upon conditions, and 2) they have one or the other identifiable cause. Similarly, Riedel-Heller, Matschinger and Angermeyer (2005) used a hypothetical scenario in interviewing 5000 Germans to learn their preferences in treatment for schizophrenia and depression. While the options in this study cast a wider net, they were nevertheless limited, in this case to the individualized treatments of ailments, including psychotherapy, natural remedies, acupuncture, relaxation, psychotropic drugs, meditation/yoga, and ECT. [See note 2.]

To the extent that the existing research uses medicalized language (such as mental disorder, addiction, substance abuse, people, living with mental illness) it preempts any consideration by the public of personhood, subjectivity, emotionality, social relations and social activities, and the role of the mental health institutional complex. How lay people think about these issues is critically important to how they currently relate to mental health and how they might participate in transforming it.

The attached survey was designed to be completed either online or through in-person interviews. As you can see, the Survey on Emotional Distress and Mental Health Diagnoses consists of seven open-ended questions, asks for simple demographics, and is anonymous.

As of this writing, 300 surveys have been completed online (and 300-500 will be gathered from in-person interviews this summer in New York City). Most respondents thus far are from the US, although data from other countries is increasing as more people and organizations join the campaign and post the survey and share it in other ways. An interim report will be presented as part of a symposium, “Beyond the DSM—Current Trends in Devising New Diagnostic Alternatives,” at the upcoming American Psychological Association convention in Toronto in August.

Our hope is to reach tens of thousands of people all over the world and to have many thousands of surveys to analyze by the end of the year. To do so, we need your help. Use the survey in whatever ways make sense in your environment—take it yourself, post it, forward it, give it out at events, keep copies in your office, conduct interviews. We ask only that you help to give people the opportunity to have their voices heard. We want our data to be international, so translate the survey if you wish (and contact me at [email protected] for instructions on what we would need to code the responses).

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Notes:

Note.1. For data and analysis within clinical psychology on a national level, see Heatherington, Messer, Angus, Strauman, Friedlander & Kolden (2012), The narrowing of theoretical orientations in clinical psychology doctoral training. Clinical Psychology: Science and Practice, 19(4), 364-365.

Note 2. Kuppin, S. and Carpiano, R.M. (2006). Public conceptions of serious mental illness and substance abuse, Their causes and treatments: Findings from the 1996 General Social Survey. American Journal of Public Health, 96(10), 1766–1771.

Riedel-Heller, S. G, Matschinger, H. and Angermeyer, M.C. (2005). Mental disorders–who and what might help? Help-seeking and treatment preferences of the lay public. Social Psychiatry and Psychiatric Epidemiology, 40(2), 167-74.

Other articles:

Levi, S. and Haslam, M. (2006). Lay explanations of mental disorder: A test of the folk psychiatry model. Basic and Applied Social Psychology, 27(2), 117-125.

Mehta, S. and Farina, A. (1997). Is being ‘sick’ really better? Effect of the disease view of mental disorder on stigma. Journal of Social and Clinical Psychology, 16(4), 405-419.

O’Conner, C. and Joffe, H. (2013).  How has neuroscience affected lay understandings of personhood? A review of the evidence. Public Understanding of Science, 22(3), 254-268.

14 COMMENTS

  1. This is a great idea; ordinary people should be front and center in the debate about what causes and how best to ameliorate emotional suffering. Given that they’re not seeking to profit from medicalizing life problems, it’s not hard to predict that regular people will understand these issues quite differently than most psychiatrists and drug company reps.

  2. This is the first time finally I am seeing someone raising the issue of letting the consumers of the MH service to be part of the conversation about the services they receive. This should be a no brainer that consumers not only have the right to voice their opinion about products and services they get but also to take part in the decision-making process about the changes ways the services are conducted.

  3. This was the weakness of the national mental health dialogue project. People equate “mental health” with “Mental illness.” So anything marketing as “mental Health” just draws disease model affiliates. Plus the organizers never connected with the recovery movement except in KC, and no other community replicated our stuff. http://www.creatingcommunitysolutions.org/

    Studies by John Read show that the majority of people still don’t believe the disease model, though. So when you market an event as “mental health dialogue,” you automatically draw only one side of the story. It’s like inviting people to a dialogue on “Pro-choice options” and thinking you’ve covered both sides of the abortion debate. It’s like inviting people to “gun control event,” and thinking you’ve covered both sides of that debate.

    • Regarding, “anything marketed as Mental Health just draws disease model affiliates” and “you automatically draw only one side of the story”, that is too black or white, Corinna. I think surveys on mental health do draw some people along the spectrum moving away from the disease model. There are quite a few people who see the term mental health and do not automatically equate it with mental illness. I think your viewpoint would be more relevant if it were presented in less absolute terms.

  4. I answered the survey along the lines that I don’t think medical doctors are the appropriate people to help those in emotional distress as emotional distress is not a medical condition.

    Also mentioned that the drugs doctors prescribe for emotional distress are likely to lead to addiction and/or very real physical illnesses and have not proven to be effective.

    I found the questions open ended enough to allow for such responses, and believe that if enough people contribute to any such surveys giving similar experiences/opinions, there is a possibility that eventually people will have to take notice.

    It is only one little thing, but little things can mount up and create change, especially if the essentially the same message is coming from a range of directions….just chip away and eventually the edifice will crumble.

  5. Include ” Regular People” in the Conversation ? Don’t you mean Include “Enslaved Populations” in the Conversation . They can collectively be a low cost think tank enabling the powerful to more effectively shift the boot heel upon our necks as they attempt to gain more willing compliance . As the alchemy of toxic metals like mercury and other chemicals alter the natural life of human beings alone or in combination with betrayal trauma turn into gold in the pockets of so called “health professionals” of the ever expanding Therapeutic State.
    Poisonous vaccines at birth and through childhood , mercury dental care , GMO foods , and growth hormones and toxic metals and chemicals placed into foods . water , and air . No it’s not a conspiracy theory , it’s a business plan . Yeah , lets start the conversation . How do we get free of all this ?

    • The “regular people” term struck me as odd, too, since in my country “all people are created equal” is to be the basis of how we are supposed to work together within our society to bring about a better world for all of us. Those who view the world as “us” vs “them” are the people behaving improperly. And it strikes me we have a lot of doctors with “delusions of grandeur” the “regular people” can’t research medicine and “know more than the doctors.”

      For example, it appears today (based upon John Read’s research also) that doctors misdiagnosing ACEs or child abuse as “psychosis” is the most common trait of all “schizophrenics” today.

      http://psychcentral.com/news/2006/06/13/child-abuse-can-cause-schizophrenia/18.html

      And the psychiatric industry’s “gold standard” treatment for “psychosis,” the neuroleptics, are known to cause both the negative and positive symptoms of “schizophrenia” itself. The negative symptoms can result from neuroleptic induced deficit syndrome and the positive symptoms can result from neuroleptic induced anticholinergic intoxication syndrome, aka anticholinergic toxidrome.

      How is one supposed to respect “professionals” who are profiting off turning child abuse victims into “bipolar” / “schizophrenics” with their neuroleptics? And if, as claimed, the “professionals” want to de-stigmatize the DSM disorders. Letting the whole world know that 2/3s of all so called “schizophrenics” today are child abuse victims misdiagnosed, then likely turned into “schizophrenics” or “bipolar” patients with the neuroleptics themselves, would likely be a very effective way of de-stigmatizing the “serious mental illnesses.”

  6. No it’s not a conspiracy theory , it’s a business plan.

    Yup. Doesn’t take conscious methodology to be part of the “conspiracy,” a confluence of vested interests will instinctively seek its own level of mass exploitation, as the purpose of capital is to seek more capital.

    I also noticed the term “regular people” as opposed to “professionals”; didn’t comment because I think it speaks for itself, even if the author believes she is using it ironically.