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 a 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 the 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

10 Things That Make Me Feel Human:

1. Collaboration
2. Anthropomorphic Climate Change
3. Death
4. Singing
5. Swimming In the Ocean
6. Heartbreak
7. Collaboration
8. Pregnancy
9. Watching the Sunrise
10.  Being on a Plane at Night

 

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

1. Why should I engage?

To help build cross-cultural relationships that will lead to learning for both our team and the people of Sierra Leone. Also, to build self- sustaining systems which will lead to the improvement of living conditions across Sierra Leone, Africa, and the rest of the world. I believe it is important to find value in one’s own work but to also realize that our work is based on collaboration. We are working together in order to learn and grow as a species. If we have this kind of mindset, we can realize that our project is more than developing a screener and diagnosing tool, it will help create a system which can contribute to the whole. 

2. How must I engage?

I must engage by using the knowledge I have accumulated over the years to contribute my best efforts to our project. More specifically, as an International Relations major, I can use the skills I have acquired to learn about the culture of Sierra Leone in order to help us all engage.

3. With whom must I engage? 

I must engage with everyone I can. Not only with the people of Sierra Leone who I will be directing with, but also my teammates. We must have a great team environment in order to work as cohesively as possible. Furthermore, I must engage with my peers, family, and friends in order to share and spread knowledge and help solidify the system through awareness.

4. What kinds of challenges, opportunities, and approaches should I care about? 

I should care about issues that might impede our work or alienate us away from Sierra Leoneans. By this, I mean cultural issues that may arise. Our work is going against local culture, as we are providing an alternative to spiritual traditions. We must be aware of these cultural barriers going in so that our work will not offend others. 

5. What might my epitaph read? 

Each day is a page and I really liked the book.

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. 

 

2.  *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 

 

3. *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. 

 

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

• When visiting India, a friend explained how the traffic system is able to operate with little regard to traffic lights. Here in the United States, we carefully abide by traffic laws and use guides and signals on the road to ensure safety. In India, drivers use their horns to alert others of their position. Honking is used as an indicator to let other drivers know where you are, with many honking right before passing another car as a warning to not make any abrupt movements, allowing them to weave in and out of traffic safely
• In France and Spain, people often kiss each other on the cheek as a way to greet each other. I didn’t know this was a tradition until recently and I found it really interesting how different cultures have a different way of appreciating one another.
• My Japanese friend often spoke about the Japanese concept of valuing the community. In the United States, we are a very individualistic society. We tend to focus on ourselves and aim to achieve and realize our own goals. Whereas, in other countries, this is not the case. Instead of focusing on the individual, they tend to prioritize the society as a whole. Although I had heard of this before, I was amazed when my friend applied this concept to Japan. She went on the explain how this ideology had been ingrained into them since primary school. They would participate in a variety of activities centered towards cohesion of the whole. Even in the workplace, a space where individuals often lead, the unity of the group was prioritized.

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 the 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

 

	Outputs	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. **
	Inputs – 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