Living with a Brain Disorder Project Launched by the Global Neuroscience Initiative Foundation
-0-4--2009 08: 1
Living with a Brain Disorder is a project officially launched by the
Global Neuroscience Initiative
Foundation (GNIF) this year. GNIF is a non-profit organization dedicated to
providing open-access information about neurological and psychological health.
GNIF aims to gather information about brain disorders beyond that normally
available through medical sources. Qualified volunteers will interview
individuals suffering from a variety of brain disorders, including Alzheimer’s
disease, Parkinson’s disease, bipolar disorder, schizophrenia, and autism.
The purpose of the interviews is to solicit information about interviewees’
perception of their illnesses, treatments they have received, and physical,
social, and emotional effects. The project results are going to allow the GNIF
researchers to draw conclusions about the various brain disorders and the
socio-geographical etiologies, the impact of stigmatization on sufferers, and
the accessibility of related medical information and treatment.
GNIF Director Shaheen
Lakhan says of the importance of the project, "It is essential for the world
to see how people with brain disorders truly feel, to reveal the impact of brain
disorder stigmatization, and to explicate the varying roots of stigmatization.
Only if we present our information via a wide variety of mediums in many
languages will we reach and educate a global audience. "
One of the primary purposes of the Living with a Brain Disorder Project is to
combat the stigmatization faced by millions of individuals having mental
disorders worldwide. Stigmatization of the mentally ill, which has been noted
and studied by researchers in disciplines ranging from sociology to
psychopharmacology, not only impedes mentally ill individuals’ integration into
society, but can also lead them to avoid seeking medical treatment or to
terminate treatment prematurely.
Seattle Central College faculty instructor Christine Loftus
that stigmatization creates a "vicious cycle" by exacerbating the mental
illness that led to it. Strikingly, GNIF has found that such stigmatization is
not solely the product of ignorance; health-care professionals themselves often
exhibit stigmatizing behaviors, inducing a serious mistrust of medical providers
by the mentally ill population.
However, the Neuroscience Initiative is based on the principle that in
general, less stigmatization will be exhibited by people who are educated about
brain disorders and who therefore understand that these illnesses are not the
fault of afflicted individuals. In presenting data from the Living with a Brain
Disorder Project, GNIF aims to dispel the common myths that lead to
misperceptions of mental disorders. At the same time, however, the role of
genetics in brain disorders won’t be overemphasized, as preliminary research has
suggested that such an emphasis leads some to conclude incorrectly that mentally
ill individuals are "inherently flawed.”
The Director of the Living with a Brain Disorder Project is Vartika Mutha,
MA. Mutha is going to work in coordination with Initiative Director Lakhan as
well as other psychologists and medical professionals to develop a standard
interview questionnaire and to recruit qualified volunteer interviewers and
interviewees. GNIF and the National Coalition of Students with Disabilities (www.NCSD.org)
have already identified a large number of potential interviewees and hope to
engage the resources of the United Nations, government and educational agencies,
and non-governmental organizations to find volunteers worldwide.
Volunteer interviewers will be prepared by Mutha to conduct a series of
semi-structured interviews online and in person. The results from these
interviews, plus professional commentary, are to be immediately available online
through the project website designed pro bono by Frank Voorburg of
Feaser and expert
programming by Richard Kern of
Researchers at GNIF can then perform statistical analyses based on
quantifiable data gathered during the interviews. Their results are going to
appear in open-access publications including the Initiative’s own journal, Brain
Sciences & Neuropsychiatry, and other scientific journals. Ultimately, the
researchers’ psychological, sociological, geographical, medical, and economic
evaluations of the data will aid in the development of the Initiative’s
anti-stigmatization and educational campaigns and their programs to improve
access to mental health care worldwide.
The Global Neuroscience Initiative Foundation is currently seeking
interviewers who are capable of respectfully interviewing individuals having
neurological and/or psychiatric brain disorders. Interviewers can expect to have
the full guidance and support of the Project Director and the administration.
GNIF is also seeking individuals who have neurological or mental disorders to
serve as interviewees, as well as mental health professionals to provide
commentary. Interviewees may be interviewed in person or via telephone, or may
answer interview questions online.
If you are interested in volunteering for any of the above positions, please
Volunteer Sign-Up form.