Neuroscience Engagement and Outreach on Neurodevelopmental Disorders: A Report from India

Specific Needs for Neuroscience Engagement and Outreach in India

India is an extremely diverse country home to about 1.39 billion people varying in culture, language, food, socio-economic status and education. Approximately 27% of this population lives below the poverty line defined by lack of nutrition, clothing and hygienic dwelling/residence. According to recent data, 23 million children in India develop a disability in the first few years of their lives. ¹ Disabilities such as the NDDs have their epidemiology throughout the globe but are more prevalent in low and middle-economic countries such as India.

Child-rearing practices in India differ across regions but have certain common factors. Children in India are often regarded as “a form of God” and considered “gifts from God”. Children with NDDs are sometimes considered the result of previous life’s sins or a stranger or neighbour giving the “evil eye”. ³ Cultural belief is often found to be a determining factor in parents’ perceptions of their child’s disability. Beliefs in the concepts of karma (God’s will, fate and destiny) and dharma (traditional established order including all individual, moral and religious duties) are common among not only traditional but also modern Indian families and serve as important determinants of many events of one’s life including disability and suffering.⁴⁻⁶ Therefore, parents often are not aware of the importance of early diagnosis and early intervention and thus rarely turn to the expert medical professionals for help.^{3, 6}

Another common belief about NDDs such as epilepsy is that it is a curse of bad evils, and thus, epileptic patients are sometimes abandoned and discriminated against the society. ⁷ Epilepsy is one of the most common brain disorders characterised by recurrent seizures, sometimes followed by unconsciousness and involuntary bowel and bladder movement. More than 85% of epilepsy cases are reported in low-income countries such as India. ⁷ According to a recent report published in the Times of India, about 95% of such cases are untreated either due to the lack of medical facilities or lack of knowledge about the epidemiology and treatment of the disease. ⁸ Epilepsy has always been a social stigma in societies such as India due to which people often turn to faith healers, black magic practitioners and exorcists and not to a medical expert such as a neurophysician. The major factors driving superstitious beliefs in India are illiteracy, low standards of life, low socioeconomic status, treatment gap and religious faiths. ⁹ Therefore, it is essential that members of the public are informed enough about NDDs, their prevalence, risk factors and the importance of early diagnosis. To achieve this, neuroscience awareness and outreach programs are crucial at the societal level.

Therefore, the current project was aimed at public awareness regarding prevalent NDDs and engagement in Neuroscience. The project was inaugurated in sync with the global brain awareness week on 14th March 2022, wherein a webinar on “Brain and Behaviour” was organised, where the audience was introduced to the fundamentals of the functioning of the brain and how it gives rise to overall behaviour. The project was then kickstarted initiating its events in phase 1, wherein a series of webinars was organised over 5 days to enhance public awareness of several issues related to specific NDDs. The webinars were organised around the following themes: Introduction to the Brain, Introduction to Neuroscience, Brain and Mental Health, Learning Disorder and ADHD, Speech and Language, ASD, NDDs: Screening, Evaluation and Diagnosis and Epilepsy. Several experts were invited from prominent institutes in India such as the Indian Institute of Technology (IITs) and National Institute of Mental Health and Neurosciences (NIMHANS) as well as international institutions such as the University of Reading, UK, University of Padova, Italy to address the audience.

Phase 2 of the project targeted the rural population from Northern India, where high school students were engaged in neuroscience and introduced to the intricacies of the nervous system. The Chief Block Education Officer (CBEO) was approached and presented with the full proposal containing the purpose and activities included in the workshop. After seeking permission from the CBEO, a few schools in the Ramgarh Block of Alwar District (Rajasthan) were contacted. Finally, two schools were selected to organise the workshop. The workshop was then conducted in two Government Senior Secondary Schools, with the permission of the respective principals. The workshop was targeted at educating the local communities by engaging the young students in understanding healthy vs. unhealthy brain functioning as well as the most prevalent NDDs and the importance of early diagnosis. Each workshop started with an inaugural ceremony with the prayers of the Hindu deity Saraswati which is considered the deity of knowledge in Hindu mythology and was followed by the address of the school principal who introduced the students to the importance of mental health and healthy brain functioning. The workshop was divided into three parts: the first session was focused on mental health and well-being where the audience was introduced to the importance of mental health and early symptoms of depression and anxiety. The second session was focused on the healthy vs. unhealthy functioning of the brain as well as the anatomy and physiology of the brain. The workshop included several hands-on activities such as a nervous system-related cross-word puzzle activity taken from Mindbogglers-2018 from IBRO-DANA resources for instructors. Students were handed a printout of the cross-word puzzle and were asked to find out as many nervous system-related words as they could in 10 min. Students were then asked to count the number of words they could find and winners were announced. Winners were presented with exciting prizes such as a brain-printed t-shirt and a similar coffee mug. In the third session, students were introduced to several prevalent NDDs such as epilepsy, learning disability and ASD. The workshop ended with the speakers sharing contact details of mental health professionals and institutes such as NIMHANS with the students and teachers.

Phase 3 was a set of two neuroscience engagement workshops entitled “Know Your Brain: A Neuroscience Engagement Day” with an aim to promote neuroscience and engage young students in neuroscience-related activities. Groups of students from different private schools in the Delhi-National Capital Region (Delhi-NCR) were invited to participate in the workshops. The session began with a welcome address, where the students were introduced to the purpose of the workshop and emphasis was laid on the importance of mental health and well-being as well as on a healthy brain. The workshop was divided into three parts. Part 1 focused on emphasising the importance of mental health and the importance of addressing mental health concerns under an interactive talk entitled “Befriending our Concerns: A dialogue for mental health”. Part 2 of the workshop was focused on introducing the importance of a healthy brain, as well as the basic anatomy and physiology of the nervous system. Additionally, this part also focused on some of the most prevalent brain disorders such as epilepsy and Alzheimer’s disease. Part 3 was designed as a fun-filled learning activity for students titled “Draw YOUR Brain”, where students were divided into a group of 5−6, and each group was handed a coloured print of a human brain and required stationary, and they were asked to create a poster with a slogan, quotation or poetry which best represented their poster. Posters were assessed on the following criteria by a team of judges: (a) Originality, (b) Clarity, (c) Creativity and (d) Group synergy. The winning team was awarded Amazon Vouchers. The workshop ended with the speakers sharing contact details of mental health professionals and institutes such as NIMHANS with the students and teachers.