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Projects --> Living with a Brain Disorder

Living with a Brain Disorder Logo

 

VARTIKA MUTHA,
Project Director, Living with a Brain Disorder


SHAHEEN LAKHAN,
Director, Neuroscience Initiative


Brief Description:

Living with a Brain Disorder, an official project of the Global Neuroscience Initiative Foundation, aims to provide an unedited insight into the often mysterious mind of brain disorder patients. The project will not focus on a particular demographic, rather the world spectrum of afflicted individuals with neurological and/or psychiatric disorders (e.g. Parkinson's, Alzheimer's, SZ, BP, autism, developmental disabilities). It seeks to ultimately combat stigmatization and discrimination, and provide essential information to create anti-stigmatization educational campaigns.

 


Brief Discussion:

Stigmatization and discrimination has built barriers that discourage people from seeking mental health treatment and, often forgotten though significant, thwart treatment plans for those who courageously seek management. In general, stigmas lessen patient integration into social circles, lower self-esteem, and perpetuate the morbidity of mental illness in a vicious cycle. It is especially troubling in children, for they are seen in context to a larger unit (family, peer group, and their larger physical and cultural surroundings). In their age groups, human contact is essential for proper development and stigmas may deprive children of their dignity and full participation in society.

The U.S. Surgeon General, Dr. Carmona, addressed mental health in a famed and long-due report that recognizes mental illness and stigmatization as a public health dilemma. He states that that in the past 40 years, stigmas in certain context have intensified despite our improved knowledge of mental illness. He found that programs of advocacy, public education, and contact with persons with mental illness through schools and other societal institutions may reduce stigmas, in addition to active research into psychopathology. Dr. Carmona puts it best, "most importantly, [people] should become far more receptive [that] mental health and mental illness are part of the mainstream of health, and they are a concern for all people". Our project aims to combat stigmatization by presenting the true view of patients in their own words, literally. This study will also aid in the development of effective anti-stigmatization campaigns sponsored by the Neuroscience Initiative and other foundations, research centers, and governments.

 


Volunteer Interviewers Wanted:

We are seeking interviewers that are capable of respectfully asking questions and recording answers, and comfortable in communicating with afflicted individuals with neurological and/or psychiatric disorders. Interviewers may conduct interview sessions in a variety of mediums; however, all will be transcribed (into the written word). The interview will have the full support of the Project Director and the Initiative administration.

The Project Director of Living with a Brain Disorder, Vartika Mutha, MA (Psychoanalytic Studies), with coordination with the Neuroscience Initiative Director, Shaheen Lakhan, and other psychologists and medical professionals will:

  • develop a common questionnaire that will be given to all interviewees,
  • recruit and guide volunteer interviewers and interviewees, and
  • be involved in formulating an introduction, analysis, and conclusion of the collection of interviews when generating a publication, book, and/or article for the Brain Sciences & Neuropsychiatry scholarly journal.

The common questionnaire allows interviewers to universally address information such as the nature of the patients condition; how the patient perceives his/her condition; what, if any, measures has she/he taken to rectify his/her condition; how the condition affects his/her physical, mental, and social wellbeing; and if whether they associated stigmatization to their condition; and the like. The questionnaire will be available many languages and formats.

TO SIGN-UP, please contact Project Director Vartika Mutha at Email for Vartika Mutha or via the Contact Form.

 


Individuals Afflicted with a Brain Disorder (& Health Care Professionals) Wanted:

We are seeking individuals (or health care professionals in contact with individuals) that have either neurological or mental health disorders. You may be interviewed in person, via a distance, or may complete the questionnaire your-self online. For a list of neurological disorders, please visit the National Institute of Neurological Disorders and Stroke. For mental illnesses, please visit the National Institute of Mental Health.

TO SIGN-UP, please contact Project Director Vartika Mutha at Email for Vartika Mutha or via the Contact Form.



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