BLOG FOUR

  1. *Based on your life experience, skills and interests, what would a design process that is both uniquely yours and effective look like? 

 

Identifying and defining a problem is the first step in a design process. In Sierra Leone, children with autism and other disabilities are being kept from schools and are not receiving services that would improve their overall quality of life. This is our project’s “why”. We have experience with working with children with disabilities in the United States and see how successful they can become both academically and socially, when provided with opportunities and services. We want the same for the children and people of Sierra Leone. This problem gave us an idea to create a tool that is culturally appropriate to screen people for autism. After the people of Sierra Leone are educated on autism and other disabilities, it will help them break the stigma of why these people with disabilities act differently. Hopefully, with our screener, people with autism and other disabilities will be able to participate in school and other events in public. Once our screener is developed and tested, the data that is collected will be reviewed and any changes to the prototype will be made in order for it to become more successful and useful in Sierra Leone. After the screener has been deemed successful, our team’s hope is that it will be discovered by people around the world, and will be adapted and utilized to make a difference in other countries. 

 

  1.  *Identify your three most important stakeholders and list five UNIQUE attributes for each one of them. 

 

  • Parents of children with Autism
    • Resilient 
    • Ability to cope 
    • Unsure of resources 
    • Supportive 
    • Grateful 
  • Community Health Workers 
    • Eager to Learn
    • Helpful 
    • Kind
    • Listener 
    • Motivated 
  • Children with Autism
    • Curious 
    • Routine based (need for sameness) 
    • Dependent on caregivers 
    • Unusual speech patterns
    • Avoids eye-contact 

 

  1.  *Identify three ways in which you will validate your project concept, technology, usability, and business model. 

 

  • To validate if the right stakeholders understand our screener, we can collect qualitative information about their opinions of using a screener, address any concerns and adapt when necessary. 
  • To validate if it is easy to use the screener, we will work with community health workers in Sierra Leone and allow them to have a say in how it will be best used as we know the culture is a major aspect of this project. By having an invested interest, hopefully our screener will be validated faster and used more in Sierra Leone.  
  • To validate the usability of the final screener, we will test out different options for responding (i.e., yes/no questions, open ended questions, using pictures, etc.) and have users indicate which is the easiest to respond to and analyze which is the most accurate. 

 

  1. Give three examples of something very interesting you learned from a friend that was a completely alien concept to you

 

Growing up in an asian immigrant family that spoke virtually no English, I was surrounded only by people with like-minded values up until around high school. I was raised to have extremely collectivist values and around the idea that anything individualist in nature was selfish and wrong. This type of thinking shaped everything I did and all my goals in life was founded upon the basis that I needed to do what was right for my family and hence, I chose the path of least volatility, least unpredictability, and one that will guarantee to bring enough financial stability so that I could take care and give back to my family in the future…even if it was not the path I wanted to take deep in my heart. Throughout college and high school I was exposed to so many different ideas on this, ie. “It’s your life. Don’t waste it living for someone else”.  To this day, I am extremely conflicted on this idea due to the values I grew up with and although I am still on that first path I described, something in me also tells me to follow my dreams. 

One time, we were scouring the village marketplace where my aunt sold sugar, in a small mountainside village in Indonesia. I definitely wasn’t expecting crispy fried chicken being sold and served to the masses, but what I encountered was unlike anything I’d ever imagine. I heard cries of pain coming from the side alley of the market, and when I turned the corner to look, I saw a large metal cage filled with stray dogs–torn, beaten, and bloody. The men continued to pound them with pipes and sticks until not a single breath escaped their lips. I had a dog of my own, at home in New York City. For some reason I could not do anything but imagine them in this place. I proceeded to see stands on stands of delicacies such as rats, cats, and bats. I was confused as to how such loving, playful animals could be killed so mindlessly, and then…eaten. Then I realized how other cultures view eating beef, or pork as taboo. How ignorant I was to believe everyone in the world should adhere to my way of life, and my values, and then be perceived as strange, or ‘other’ as I if my Americanness made me the standard. It really opened my mind to the plethora of different thoughts and values that exist out there, who’s to decide what is normal?

BLOG THREE

Questions of the Research Team

 

1 How are we going to disseminate information when autism is not defined?
2 How can we teach the people of S.L. in a culturally appropriate way?
3 How do we break the spiritual beliefs of the cause of autism?
4 How can we train the workers in a short amount of time about the great depth of autism?
5 How can we validate the screener when there is nothing similar to it to do construct validity?
6 What type of screener would be “easiest” to use (checklist, electronically, interviews, etc.)?
7 How can we validate the screener with a small sample size?
8 How can we effectively communicate with the people of S.L. in order to avoid cultural barriers?
9 How can we effectively provide training on autism with limited resources in the field (no PP, no handouts)?
10 How do we explain and share information about autism and other disabilities (verbally, pictures, videos, etc.)
11 How do we locate the people that need this help when they don’t attend school?
12 How can we encourage and monitor the implementation of the screening tools?
13 How much time do parents of individuals with suspected disabilities spend around typically developing kids? Will they have a frame of reference for their child’s behavior/development?
14 Who will be good citizens in Sierra Leone who can introduce us to these families?
15 How can we help families/guardians support people with autism?
16 What other organizations can we collaborate with to increase the resources available for treatment after diagnosis?
17 How can we help students with autism be included in schools without fear of bullying?
18 Who can continue to sustain the system we’ve built after we have left the country?
19 Will our research open doors to the other types of research on different disabilities? 
20 What other countries have a similar lack of research and funding in regards to autism?

Diagnosing Autism in Sierra Leone: Logic Model

 

Stakeholders Inputs Outputs Outcomes  Impacts
-Community Health Workers

– World Hope International Workers

– Families of children suspected of having autism

– Teachers/Schools

– Sierra Leone Autistic Society

– time

– money

– screeners

– trainings

– Number of people screened

– Number of people trained to identify stereotypic behaviors related to autism

– Number of local people reliably trained to administer the screener

– Number of individuals with autism who reach adulthood

– Children with disabilities are included in the schools & receive services to help them

– Caregivers have a reduced level of stress

– People have an accurate understanding of what autism and other disabilities are 

– Inclusion for students with autism in schools and communities

– Prevalence data leading to more interest groups devoting funding to education and intervention for individuals with autism in Sierra Leone

– Shedding light on the scientific basis of autism (e.g., environmental, genetic) vs. supernatural (e.g., demonic possession)

– Reduction in the seclusion of families who have a child with autism for fear of bullying

M&E Plan

Assumptions:

  • Screener is accurate in identifying those with autism and can be used across all ethnic groups in Sierra Leone.
  • People in Sierra Leone will see the value in using the screener and will continue to use the screener after our team’s fieldwork.
  • Parents will act on the results of the screener to seek support services, accessible resources, training, and education

 

Metrics
– Number of people screened

– Number of people trained to identify stereotypic behaviors related to autism

– Number of local people reliably trained to administer the screener

– Number of individuals with autism who reach adulthood

– Have community health workers document each person screened and the result of the screening in a notebook***

– Award certificates to those who complete the training on stereotypic behaviors of autism and document number of people who have completed the training***

– Award certificates to those who complete the training on administering the screener reliably and document number of people who have completed the training***

– Use screening data to determine the number of individuals with autism in childhood. Future teams will remain in contact with those who have been identified and track them through their lifespan. **

– Children with disabilities are included in the schools & receive services to help them

– Caregivers have a reduced level of stress

– People have an accurate understanding of what autism and other disabilities are 

– Have schools document the number of students who screen positive on the screener who are attending school via a notebook***

– Qualitative interviews will measure the stress levels of caregivers. *

– Qualitative interviews about autism, its origin and characteristics related to autism*

*=short term, **=long-term, ***=both

 

BLOG POST TWO

  1. Give three compelling examples of how cultural issues affect your project. 

 

Culture is the backbone of our project. If we can’t attack this issue by the head, we can’t accomplish our goal of increasing autism awareness and ultimately providing a screening tool that can be used widespread across Sierra Leone and Subsaharan Africa. This has been a challenging endeavor mainly due to lack of funding or motive to research the causes, characteristics, and implication of autism–let alone knowing how best to treat it. There have only been a little over 100 research papers written on Autism, juxtaposed against Europe + USA’s combined total of about ~19,000 papers. Western diagnostic tools cannot simply be “refined” and implicated in Sub-saharan nations like Sierra Leone due to inescapable cultural and economic barriers entwined in the tests themselves. An example of this non-translational roadblock is one test where they assess the child’s behavior at an environmentally controlled “birthday party”. Sierra Leoneans do not celebrate their birthday this way, meaning they also do not have birthday materials like decorations and a cake at their immediate disposal–thus, rendering this portion of the screen non-viable and externally invalid. 

 

On top of this, one of the main presumptions that are halting the progression of the nation’s Autism care is cultural–the belief that Autism, and mental health in general, is the result of karma, demon possession,  and other religious/superstitious phenomena. This idea is so prevalent that building owners are refusing to rent out their spaces for the Sierra Leone Autistic Society, the only school that functions to treat and educate those with Autism. Teachers often mistreat students with Autism under the false pretense that they are to blame for their condition. One of our main goals as a team is to educate the populace on the true causes of Autism in a “culturally appropriate” way. It is quite difficult, to say the least, to change a belief system that is so deeply ingrained in a society where information does not travel seamlessly, nor quickly. Not only do we need to create a culturally relative diagnostic tool, we need to find a way to spread this tool, and educate people on how to use it. We must first get people to understand that this is not anyone’s fault or the result of a demon possession in order for them to realize that their child can be treated and nourished so that they may have a fulfilling life. Only then, can we have a true solution to this issue–one that spreads like a wildfire.

 

  1. Have you experienced or observed any of these social situations at home? Describe atleast three such situations. 

 

I come from Indonesia, a third world country in which quality healthcare is unevenly distributed amongst the population and mental health is treated as an afterthought–if thought about at all. Even when growing up in the US, my parents didn’t acknowledge any health-related issue that was not obviously and immediately harmful–and when they did, our minimal healthcare coverage would not suffice. Those with severe illnesses are thus usually treated as hopeless cases that cannot be helped due to lack of awareness and access. In addition, my parents are highly religious and unfortunately lack an extensive educational background. Mental illness is not even acknowledged as an illness–and is especially not as concerning as a physical illness. To a lesser extent, they also hold similar superstitious beliefs in that people who do bad,  deserve bad and thus receive bad. The blame falls on someone, oftentimes on the victim or their parents “wrongdoing”. In this way I relate a lot to my project, as growing up I felt that my anxiety was my fault and I can get rid of it by being a ‘good girl’. This is not the way to think about illness and is impeding treatment and preventing others from living up to their potential. 

 

  1. Give three examples of cultural practices that can be leveraged to address community / market problems.

 

As described previously, we must dispel the cultural ideas of demon possession, karma, etc. as causes of Autism. Somehow, we must disseminate this information through large and  dispersed areas in order to make our screening tool a self-sustaining system with a very far reach. We can perhaps do this by working with what they already know–perhaps using their already deeply ingrained beliefs to allow them to understand Autism in a language they already know. We can somehow collaborate with their religious leaders in spreading accurate autism awareness. It’s clear we must do heavy research on the cultural facets prevalent in Sierra leone, and try to empathize and understand the way they think and what they value.

GSIF POST ONE

Why did you enroll in this course (motivation, prior interests)? 

 

There are various reasons for my enrollment in this course. As a biology and psychology double major on the pre-med track, I have chosen to dedicate my life to helping others not only survive but thrive. Because I am only an undergrad and have a long ways to go before I can make a direct impact on someone’s life, partaking in GSIF was a no brainer. Throughout my entire search for the perfect career path, I did not know much other than the fact that I had a yearning to participate in something far bigger than myself. Hand in hand with my deep interest in the mechanisms of life–more specifically, the body and the brain–joining GSIF and the Diagnosing Autism team offers a platform to reach my goals of impacting the quality of life in people and regions so far removed from the bubble of privilege that is the life of an American private college student. 

 

A separate yet not so separate reason boils down to my firsthand experience as an Asian-American. Growing up in New York City, both my parents worked 2 or more random, odd jobs each–an example being my father who worked as a busboy, waiter, and paperboy, balancing all three on top of being an illegal immigrant: a job filled with fear, pain, and rigor in and of itself. However, one thing they made sure I did was understand that despite these perceived difficulties in America alone, life in their native country (Indonesia) was far worse. Consequently, I lived in Indonesia for three entire summers as a ploy from my parents’ to increase my gratitude and understanding of my privileged life. Upon getting ill, I noticed virtually no healthcare within the vicinity of our little mountainside village. We would have to travel over an hour to the nearest city for a simple check-up. Even in this small hospital, the conditions were nowhere near the standard for proper sanitation of a healthcare facility. The walls were dirty and moldy, and the rooms were unkempt. I cannot even fathom how mental health would be treated, if even seen as a disability worth putting the money and effort into. 

 

How do you envision this course making you a better () student? 

 

To fully commit the time and dedication to a project that directly improves the lives of real people in places distant in both geography and society–and to solve problems that have real, tangible consequences imparts a colossal responsibility upon you and your outlook on life. The amount of focus and growth required to take on an endeavor as ambitious and as seemingly farfetched as curating not only Sierra Leone’s but the entirety of the African continent’s first official, widely recognized diagnostic tool for Autism is immense, to say the very least. This new growth would translate well into my other classes as well as my journey to becoming a physician, as all of these undertakings require a certain amount of utter drive, passion, and “can-do” attitude. Most importantly, it will instill in me the idea that I really can do anything I set my mind to, no matter how daunting, or unrealistic the impending project may be.

 

The World Health Organization estimates that over one billion people who need eyeglasses do not have access to them. The vast majority of these people live in developing countries like Kenya where there is barely one optometrist per one million people. Given the high poverty levels, access to eyeglasses is almost nonexistent. Lack of proper eyeglasses severely impacts people and their livelihoods by decreasing their productivity at work, limiting or eliminating new opportunities, affecting their quality of life, deteriorating their general health and possibly leading to (preventable) blindness. What solution do you propose to address this problem?

 

The simplest and most feasible course of direct action would be to somehow gather voluntary (or paid/both) optometrists from around the world to specific regions where this issue is the most prevalent, and have them perform eye exams for a temporary amount of time (a structure similar to Doctors without Borders), and collect funding to distribute the eyeglasses. While this course of action is very direct, it offers only a quick fix to an issue that simply cannot be solved by temporary means. 

 

In this case, I would probably opt to continue this direct work by all means necessary, but simultaneously have a bottom-up approach in the works as well. This may look like fundraising not only for optometrists to travel to developing regions or purchasing eyeglasses for a mass population of those who need it, but also (and for the most part) funding the education of those who are willing, so that they have the opportunity of spreading their own knowledge to more of those who are willing and so on, so forth. This would hopefully result in a domino effect–a proliferation–of education so that these regions may one day be self sustaining in the fields of healthcare and such. The even greater, more long term hope would be that due to this new generation (and further generations) of an educated populace, they would be able to provide larger masses of children with eyeglasses and the number without the necessary eyecare they deserve reduce to a number that is much more feasible by regional healthcare professionals–to a number that doesn’t intimidate one so much so that it reduces the drive to even pursue a solution due to the gravity of the issue.