Tag: advocacy

Posted in advocacy, Peer Support, Supporting Friends/Family

What Makes Us So Divided?

Posted on by alidware

In yesterday’s post, I mentioned that there is a divide in perspectives about mental health in our little neuro-diverse community, and this can effect how we advocate and what we educate ourselves about.

Currently, there are two major extremes, and I think each has existed since the dawn of mental health “treatment”, since we started categorizing behavior and attempting to quantify it. This divide became more noticeable after the cure-all lobotomies were deemed medically unfit, opiates for anxiety and psychosis became too addicting, and the development of Thorazine (I.e the chemical lobotomy) hit the shelves. Patients were more controllable, malleable, and more people were able to leave Asylums and enter society.

The problem with Thorazine and E.C.T, the next best treatment for depression and psychosis, was the damage they caused. No one really knew how medication worked, other than later observing a few chemicals in some people, a few others in other people, and never being able to come to a solid conclusion. We still don’t have one. E.C.T fried some people, disintegrated their personality, shredded their memory, but some were content with this because they weren’t really able to have any other feelings about it.

Drugs made money. Did I forget to mention that? A lot of it.

And eventually groups of people who felt outpatient treatments like medication, and inpatient treatments like E.C.T and solitary confinement, were inhumane, united and developed into the Anti-Psychiatry group.

Now, as time has passed, we have made mental health treatment look very pretty. Hospitals are (mostly) clean, medication is monitored more closely, and drugs like Thorazine are not as widely used in the continental U.S. I can’t speak for Europe or Canada or South America. I know Africa doesn’t have much of a choice but to use the older drugs like Haldol and Thorazine because they don’t ever get monetary assistance with anything. People are still chained to poles in the middle of psychosis in some parts of Africa.

But just because something looks pretty here in the U.S doesn’t mean it’s better. E.C.T is still popular. People say it saves their lives and maybe it does. But to send pulses of electricity through someone’s brain without fully and scientifically understanding the consequences (I.e why does it cause memory loss? Why does it effect some people’s personality?), and without fully and scientifically understanding how the depression is relieved (is it because the brain is being damaged or because their personality is so fried they could care less to be depressed?) is probably one of the least ethical ways to go about treating other humans.

The APA specifies that benefits must outweigh the risks for treatments like this to continue. I’m not convinced they do.

The same goes for medication: it’s researched (barely), results end up skewed (publication bias) and no one actually knows the long term effects for the “updated” ones.

So I understand the mistrust, the disdain, and the need for something better, something that feels compassionate and reasonable and ethical. That’s the driving force of most anti-psychiatry believers. I know because when I read Brain Disabling Treatments in Psychiatry by Peter Breggin M.D at 14, I started reading research (I had friends in college with access to databases) and was appalled. I declared myself anti-psychiatry.

The other extreme side is the medical model. Most people who believe in this model also believe that having the drugs is better than having their lives in shambles because of psychosis or mania or depression or whatever. The risks, for them, DO outweigh the benefits. Many believe that their doctors do the best they can.

They also tend to believe that our experiences are the result of chemical imbalances. They agree that these experiences are brain diseases.

Now, I have no issue with either view. Do I tend to lean toward hypothesizing our experiences are more so a variation of the human mind over hypothesizing chemicals (that have no stable baseline to be compared to) and brain deterioration causes “mental disorders”? Yes, I do. But since neither have been proven absolutely wrong, I can’t say I believe one over the other.

The issue with this division is that it impacts what and how we advocate.

When we should be advocating for whole person care and individualized approaches, we waste time convincing the world that we’re “sick” and therefore need compassion (but not too much because we don’t need pity). We don’t want people seeing our “illness” as us, but flaunt the diagnostic label and call ourselves “just the same as everyone else, but different.” When we should be empowering each other, when we should be guiding each other on how to adapt to our experiences, we waste time hating the medical model and spouting all the reasons it’s wrong.

We’re just going in circles. It’s asinine.

I don’t think we all need to ascribe to each other’s beliefs. That’s one reason why I encourage everyone to read research; when done correctly and ethically, science will tell you facts and you can dispute them, but that doesn’t change them. We can disagree on everything else. But not facts.

Now, it’s another thing when the science is wonky.

But in terms of advocacy, being on the same page is pertinent. Otherwise, we’re only impeding each other’s progress; I’ve been witness to consumers putting other consumers down because they don’t believe in diagnosis, or they do believe in diagnosis. Suddenly wanting off medication and believing that you can live a life off medication is a cardinal mental health sin. Suddenly gaining benefit from medication and feeling more comfortable on it is a cardinal mental health sin.

We need to remember that we’re all on the same side. But we also need to pay attention to facts. When we advocate, it’s not about diagnosis. It’s not about being different. It’s not about how corrupt the pharmaceutical industry is. It’s not about how psychiatrists are over-medicating and over-diagnosing. It’s not about the lack of available facilities, or sub-par care. It’s not even about our own experiences. Let me say why.

A lot of these are issues we want to address are serious issues. But they will be addressed naturally if what we present are coherent arguments and factual knowledge, all with compassionate nudging. If we prove that we are a strong, united forced, if we prove that we have insight to what we need for our mental health improvement, we can work alongside healthcare instead of against it or in spite of it. We can do things besides push medication on each other. We can do things besides convince each other medication is poison.

We can recreate the whole mental health system. And I’m sure we can all agree it needs a serious make-over.

And so I say, when you post on your site, on your social media, or when you’re giving talks, keep this in mind. Keep in mind that it’s not just about your diagnosis or labels in general. It’s about all of us. It’s about integrating into the system and becoming a part of it. If you want things to change, if you want to really be heard, if you want compassionate care for us all, that is the way to do it.

#MentalHealthAwarenessWeek just isn’t going to cut it.

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Posted in Peer Support, psychology, science, Therapy

How To Read A Psychological Research Paper

Posted on by alidware

One thing I notice a lot of advocacy websites falling victim to is citing research without really understanding what that research means. A lot of the time they’re pulling from secondary, third, fourth, or fifth resources because the information they get comes from news reports that are also reporting information from secondary, third, fourth, or fifth resources. A secondary resource, for example, would be a textbook or another article describing the research findings.

The issue with this is very rarely do these articles go into detail about the research procedure, the methods, or any resulting confounding variables. The issue with THAT is the only information YOU receive are the results. And when the results say something like “Eating a Grapefruit Everyday Will Cure Your Anxiety”, you want to believe it. What you’re missing is that the study had 20 subjects, no control variable, and the subjects–by the way–were worms.

I’ll cover some basic ways to judge whether or not a paper you read–and you should be reading the actual paper–is a valid result or something that needs a lot more investigation.

First, if you haven’t yet read any of the series Is Psychology A Science posted here on this website, you can find the first in the 4-article series right here at this link. It will give you background information on why this is important from a scientific perspective.

Contrary to what you may believe, you don’t need to be a seasoned researcher to read these papers. You don’t need to know how to do an ANOVA test or a Chi Squared test. You don’t need to know what p <.05 really means. You don’t even need to know a lot on the subject the paper reports on. All you need is some basic knowledge. Let’s go step by step.

What does a paper consist of?

What’s great about research papers is that you always know what to expect. There will be the first paragraph, which is called an Abstract that tells you what the paper is about and often contains one sentence describing the results.

Often a full-length introduction is followed. This is important when the study is backed by, or has a lot of reference for, other experiments. Here you will find the importance of the subject and what other researchers have found and how this study will differ.

Next commonly comes Methods. This is where all the materials are listed and the procedure (including participants) are described. This is done in great detail so that peer review and (if/when published) practitioners and psychologists and everyone who SHOULD be reading the study, can determine validity. Here, you will learn the ins and outs of the experiment and/or the outside resources used to gather data.

The Results follow. Here you find the final statistics. You will find step-by-step results for how each participant (or group of participants) and sometimes you will see charts, graphs, info-graphics of all types that represent the data.

Discussion comes last. Here you find what those results mean and any recommendations for further research. This is where you will find confounding variables (discussed below) and another place to scrutinize the validity of the study.

Afterward comes acknowledgements, often who financially supported the research. This can be particularly important when reading studies about medication; if the pharmaceutical company that makes Risperdal (Johnson & Johnson) is providing funding for Risperdal research, the paper is subject to publication bias. This can be harder to detect and won’t be discussed here. I will be writing a separate post on this.

Then the reference list, which are other studies cited in the paper.

This layout is important. If the paper you’re reading isn’t like this, it’s not a research paper and what you’re reading is a secondary source, meaning a summation of the original research. This could be so far from the actual research finding, that it’s completely useless.

Is this studying what the researchers meant to study?

When reading a paper, it’s important to sniff out whether what’s been observed is what was actually meant to be observed.

This is known as construct validity. Research in psychology can be tricky because most of the time you’re observing behavior and behavior can be caused by many factors. For example, if we’re trying to study whether or not television violence influences real violence in young children, we need to define what violence is and what constitutes aggressive behavior. If we don’t, trying to find a relationship between behavior and the amount of violent television being watched will be hopeless; you won’t see any relationship, you’ll just see aggressiveness and violent television as separate entities. They may look correlated, but when properly studied you may see different results.

If a paper related to television violence and children do not have operational definitions (the definitions of the behavior we’re looking for), than it’s safe to say that paper isn’t really showing much.

A lot of the time this gets twisted in the media. For example, you’ll read statistics everywhere that those labeled with schizophrenia have a shorter life span of about ten years. A lot of people take that as “schizophrenia kills”. But is that really what reports and studies are saying?

No. There are other factors: taking hardcore, organ-destroying medication for decades is one of them. Less access to proper healthcare–many with the label are homeless and struggling with drugs or just at the mercy of their mind. Disability money doesn’t necessarily fund a heart healthy, body healthy diet either; most organic foods and healthy foods are hard to sustain for those on limited income and no support. Suicide rates are also higher. So this idea that some mythical chemical imbalance causes some mythical disease that slowly kills the brain like some kind of hallucinogenic Alzheimer’s is incorrect. Or rather, it’s never been proven.

This leads us into:

What Are The Confounding Variables?

These are factors which could muck up research findings.

For example, a lot of the papers I referenced in Is Schizophrenia a Brain Disease? had their confounding factors clearly listed. They said blatantly that much of their research has no definitive results. One paper even urged people not to take their results as proof that a chemical imbalance explains what people experience. So where does this idea that this label is a disease come from?

From people taking the one line of results and posting it in the New York Times or a CNN reporter giving a brief run-down of the study on national television. Belief is where this idea comes from. Science says otherwise.

I think one of the most famous incidents of this is the idea of the schizophrenogenic mother.

There was a time doctors and patients believed it was the mother’s bad parenting that created the experiences now labeled as schizophrenia. To test this, one researcher took a group of mothers who had children who matched the diagnosis and studied how they interacted.

She concluded a mother’s behavior can create ‘schizophrenic behavior’. Then she listed that in order to be an official and valid study, she would have to also study mothers who don’t have labeled children and their interactions; her confounding variable was no control group.

So what happened? The results were taken and spread to newspapers, to doctors, to psychologists and psychiatrists and for a while people really believed the mother was to blame for madness.

Because the general public, and even some doctors, didn’t understand how to read research papers. And also because it was an answer and they didn’t have any other answers. Rather than be scientific, they followed their intuition. It’s something that still plagues psychology today.

That’s why

Control Groups

Are super important.

Say you’re reading a paper on the medication Abilify and its relation to a reduction in psychotic symptoms at a dosage of 20mg. You read in the procedure section that thirty five people (an okay sample size) were recruited and given Abilify and you read in the Results section that 89% of the participants reported a reduction in symptoms within the four week time period. You also read in the discussion section that the researchers conclude Abilify has effectiveness at the dosage of 20mg on psychosis.

This sounds legitimate. And any average person who read that paper would probably feel that Abilify really does have an effectiveness on psychosis at 20mg.

What would be some problems with this, though?

One striking thing would be–where is the comparison? In order to see any level of effectiveness, we need to compare it to a group that doesn’t receive the treatment, a group that isn’t manipulated. This is a control group.

We’d also need to know how the participants were randomly chosen. We’d need to know the symptoms which were reduced and whether that was sustained. I’d criticize the four week trial period. Was there also a follow up? If so, what were the results? And, if you are like me and extra-critical, you’d wonder why they didn’t cite all the research in the introduction which says there is no efficacy for an Abilify dose over 10mg.

This can make certain things hard to study ethically and practically. There are many ways around that, but we won’t discuss all that here. If you are reading a paper and have trouble finding what they compared their manipulated variable to, or if their comparison group seems shoddy, search for some more research.

I’d like to point out had that research example I gave above actually been published, hell would have frozen over. There are some shoddy papers out there, but a lot are caught in peer review.

Last but not least:

Results are results. Interpretation is interpretation. Secondary sources are not results.

Media attempts to get things right. But often they don’t.

If you are on an advocacy site for mental health and you read a sentence that says “research shows”, and they don’t list a reference, ask for it. If they do list a reference, click on that reference. If that reference is another secondary source, and that secondary source doesn’t list a primary source, like the actual research paper, than you can’t be sure how accurate that “research shows” statistic is.

I’m not saying we should start mistrusting our fellow advocates. I’m saying as advocates the information we should put out must be backed by facts, not opinion or interpretation. Most of us who advocate are peers, meaning we have lived mental health experience. Great! We already have an advantage by having inside knowledge on experiences that most doctors don’t. Let’s boost that advantage with also having scientific knowledge and thinking critically.

Even I’m guilty of saying “research shows” in previous posts on my old blog and perhaps even this one already. It’s hard work finding these papers and reading them and citing them and analyzing them. But did anything come from soft work? No.

If you want to advocate, help empower us by criticizing research, reading research, and sharing research. Open a discussion about what’s being studied. Push clinical psychologists and psychiatrists to actually read what’s been coming out.

Together, we can change the perspective of mental health in society.

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