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Researchers Should Seek Families' Input on Mental Illness

04/13/2014 10:43 EDT | Updated 06/13/2014 05:59 EDT

People trying to help their family members struggling with severe mental illnesses don't have access to researchers. It's no surprise, then, that researchers ignore topics that reflect their perspectives on how to improve the mental health system.

In case any grad students, mental health services administrators or academics want to explore some fresh issues, I hope they will consider the five areas discussed below:

1) Examine the impact of inadequate public education about psychotic disorders.

Neither Canada nor the US has adequate public education about psychotic illnesses. When ill people don't receive the treatment they need they are more likely to be victimized, develop addictions, become homeless or become incarcerated. We need to investigate the role that lack of public knowledge about psychotic disorders plays in delays in seeking treatment.

Recently I've been meeting otherwise well-educated parents who have no idea what the state of knowledge is about psychotic illnesses. They also don't know what the best treatment approaches are and how to access these too rare services. At the same time, they have been influenced by the persuasive anti-psychiatry/anti-medication rhetoric that continues to flourish. It would be useful for them to know what the current success rates are for anti-psychotic medications.

2) Examine the impact of lack of comprehensive psycho-education programs about psychotic disorders for people living with these illnesses.

Many parents I know have been able to take useful psycho-education programs through early psychosis intervention programs or through their local schizophrenia societies. However, their floundering sons and daughters don't have easy access to programs with the same information. For instance, I don't know of any program offered by Vancouver's mental health services (besides the early psychosis programs) that lets clients know that it's common for people to not understand that they are psychotic. The biologically based lack of awareness of being ill makes understanding and accepting these illnesses very difficult. And too often families are left to struggle on their own to educate their family member about their illness.

3) Examine the curriculum requirements for programs training mental health professionals.

For most of the 20th century, psychological and sociological theories dominated academic training about mental illnesses. Freudian based theories in psychodynamic and family systems theories believe faulty parenting was the problem. Sociological theories, while not discounting these ideas, have preferred to focus on adverse social circumstances as the culprit.

Many therapists and social workers still never receive any curriculum on neuroscientific research about schizophrenia. These clinicians might be shocked to read the Fact Sheet about Schizophrenia on the website of the Canadian Psychiatric Association. This document summarizes the reasons schizophrenia is considered to be a brain disorder. None of the research about environmental factors refers to problematic parents.

We need to acknowledge that inadequately trained mental health professionals do very real damage. When they use flawed theories to interpret the disturbing behaviours they are witnessing, they delay access to crucial treatment. Their interactions and interpretations make it harder for people to understand the source of their difficulties. And the wide prevalence of parent blaming theories can alienate ill people from their best source of support.

4) Examine strategies for promoting collaboration between mental health professionals and family caregivers. Investigate any professional development programs that could help mental health systems improve the ability of their staff to work cooperatively with families.

As Canada and the US deal with their aging populations, many new supports are emerging for family caregivers. Health care systems are usually eager to appreciate and encourage families caring for aging relatives. This is very different from the many negative experiences that families coping with severe mental illnesses have with service providers.

My daughter, after two years of profound psychosis, had an extremely grim prognosis. Even when the right dose of an effective medication was eventually found, the stats didn't look good. However, she's achieved great stability for many years. She enjoys her life even though she is burdened by the significant disabilities that often accompany schizophrenia. This has only been possible because we found a psychiatrist who has worked collaboratively with us. He understands the value of our input. Rarely have I seen other families who have been able to access this sensible approach to helping people with mental illnesses.

5) Examine the growing number of mental health services offered to people with psychotic disorders that undermine the participants' beliefs in science-based approach to their illness.

I have watched with despair as our limited tax dollars for mental health care go to support programs that are not only not evidence-based but that promote "alternative" understandings of what neuroscientists call brain disorders. I don't know of any other field of medicine that has been so negatively impacted by "alternative" theories. Canadians need to learn from the expensive and misguided American policies that have influenced mental health care far beyond its own borders. Last week the Wall Street Journal joined in condemning the US Substance Abuse and Mental Health Services Administration (SAMHSA) for the ways this agency, in its support for anti-psychiatry groups, "undermines the treatment of the mentally ill."

This catastrophic denial of the reality of severe mental illnesses is being investigated by the US Congress. Here's a link to a speech by Rep. Tim Murphy summarizing SAMHSA's failures; he is leading a bipartisan legislative effort to end the policies that have led to such disastrous consequences. As new research discovered, because of flawed mental health policies, there are ten times as many people with mental illnesses who are incarcerated as are in the few acute psychiatric beds that remain.

The parents I know who have sons and daughters living with severe mental illnesses are doing everything possible to help them manage these difficult disorders. However, the best outcomes will only be achieved when researchers investigate the topics that have been ignored for too long.

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