1. Our IRB Strategy 

 

Our team has been working over the last several weeks to prepare to begin the writing of our IRB as it goes hand in hand with our research. Our team has delegated tasks into smaller teams and individuals while keeping some tasks as a group initiative. Below is our bulleted breakdown. 

 

Person Responsible	Task
Everyone	Develop research questions Develop hypothesis  Determine our systematic method on how we will protect and safeguard privacy.  Develop a coding technique and determine how data will be stored.  Examine other diagnostic tools and develop our possible screener questions
Dr. Morin	obtain the letters of support that show we are welcome and allowed to be there Sierra Leone Autistic Society
Alyssa	Primarily writing the IRB Write basis for why our team needs to be approved for a waiver of written consent based on culture and tradition  We will shape it as a “pilot study” per Matt from IRB
Kathleen	Collect psychometrics from other screeners Collect reliability data for the questions that are very similar to one from another screener to help show that we are not starting from complete scratch and show we did the legwork to create the questions We need to submit all possible questions
Emily	Develop questions for focus groups Develop questions for interviews
Grace	Help with verbal consent forms and all questions to check for cultural appropriateness Help with building the basis for why written consent is not feasible
Lindsey	Help with creating our teacher training with her background on Sierra Leone’s structure of health care and education system

 

1. Develop an outline for your mid-semester presentations. What supporting evidence will you provide for each point? How will you boost your credibility every step of the way?

 

We have continued to delegate our tasks for the presentation so that we can work effectively. We plan to only have 2 people from our team present during the 5 minutes and then the rest of us will help answer questions during the Q&A. Our main presenters during the 5 minute portion of our presentation will be Emily and Grace. 

 

• Logo
• Goal: All children in Sierra Leone screened by the age of 4
• Macro:
  • Amount of research done in US/western worlds
    • Part of the literature and needs section of the presentation
  • Level of knowledge about autism in general community (if we can find literature that speaks to this)
  • In comparison, research in sub-saharan africa and specifically Sierra Leone
  • Lack of available culturally appropriate screeners/diagnostic tools
• Mirco:
  • How does this impact the children and families?
  • Cultural beliefs of causes of autism
  • Shunning
  • Giving the child back to god
  • Possible loss of income
• Evidence of people wanting our help
  • Sierra Leone Autistic Society
  • Dedicated to outreach → AAC device donation
  • Psychiatrists and teachers asking for help when Dr. Morin visited in January
• We plan to talk about how our project is credible because of the support of the Sierra Leone Autistic Society and the other schools who have already written letters of support for us, along with helping us to review our screener and questions.

• We didn’t inherit anything as this is a new project so we will not have to address this portion. 
• We will discuss our approach and mixed methods approach to complete our project
• We will make sure to emphasize our approach for making a systemic change rather than simply introducing our product and leaving things there – incl. plans to train both community health workers, religious leaders, and ordinary citizens
• We will address our competition/ challenges by explaining cultural beliefs and divides, and how they can cause disturbances along the path towards realizing our goal
• We will compile work we have done throughout the semester across various topics, in order to support our project’s progress

1. List 10 things that make you feel human.
   1. Emotion: both the highs and the lows.
   2. Autonomy: the ability to determine the course of my life.
   3. Feeling loved.
   4. Feeling hated.
   5. Music: listening, performing, and creating.
   6. Travelling. 
   7. Meeting new people, listening to their stories.
   8. Working towards a goal.
   9. Meditating.
   10. Making mistakes.

 

1. Articulate your philosophy of engagement as it pertains to your work with the GSIF / LVSIF.

My philosophy of engagement surrounds the accomplishment of one main goal: to impact someone else’s life in a positive way–no matter how small or how large, I always seek to lift someone up in any sort of capacity, and by doing so, I feel a reciprocal benefit from knowing I did all I could to make someone’s life easier. Why should I engage? What is the point of living if all that drives its purpose is the pursuit of fulfilling your own desires? One of the biggest things that makes me feel human is building relationships with other people. Imagine a world where everyone works to lift eachother up–I think it would be a much better place than one where competition is at the epicenter of progress. I don’t know what the reason is for existence. What I do know? Existence means nothing without experiencing it with those who are going through it with you. The question of how to engage then becomes a little more complicated when existence spans the entire earth, where cultures differ significantly, and thus, so does the human experience. How do you interact with someone whose life you know nothing about? Whose values and goals you know nothing about? The answer–is to simply go for it. Engage with respect, with curiosity, with love, and most importantly, with empathy. The key to understanding someone else’s motives for a particular thing is to first understand what in their lives led them to where they are in their mindset. Only then can you engage with meaning. Nothing will come out of an engagement where you refuse to understand their perspectives. This is the basis of our project. From a highly secular, academic standpoint, it is easy to view the spiritual, ritualistic  viewpoints of “Autism” (or simply, mental disability) of Sierra Leoneans as crazy and unfounded. If we continue with this perspective buried in the back of our minds, we would never be able to truly understand the way they think, and thus, never accomplish our goal of implementing a systemic change in the way they view mental disability. We must connect with an open mind and have the goal of bringing long-standing positivity into the lives of the people we engage. This cannot be a hit and run, nor it can it be a relationship of dependency. Thus, to obtain this happy medium, it is imperative to really understand what drives the Sierra Leonean people to get up each day and do what they do, no matter how foreign the idea may sound. The challenge to this, especially pertaining to our project, is that the disconnect lies in spirituality. How could we tell them that their beliefs are wrong, without disrespecting them or causing a loss of dignity, especially to those mothers who had to make the heartbreaking decision to “return their child to God”? How do we tell those mothers their decision was one that did not have to be made? How can we respectfully spread awareness of a scientific truth without making people feel like their beliefs and values are being insulted? These are all things we need to take into consideration before we embark on our fieldwork this coming August. It is difficult to know the absolute correct way to approach such a sensitive topic to people who have endured existence in a completely different setting from you, who have learned about life in a completely different way than you. However, what is important is that, in whatever we choose to do and however we decide is best to engage, that we do engage–and with that engage with the goal of uplifting another human being in any capacity. I want my epitaph to read: “Emily Tasik–someone who gave until she could not give any more.”

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?

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

 

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.

 

2. 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. 

 

3. 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.