GSIF Blog Post February 14 2020

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.

GSIF Blog Post February 9 2020

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

 

GSIF Blog Post January 31 2020

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

I am a part of the Diagnosing Autism in Africa team. There are currently many cultural issues that affect the ongoing situation in Sierra Leone. These issues not only create misperceptions within the country but also impact the likelihood of our project to succeed. The first cultural issue affecting our project is the misperception people have about individuals with autism. Many people do not know what autism is, they instead believe that individuals who have what we know and call autism, are demon-possessed or cursed. Instead of seeking medical and professional treatment, they resort to spiritual healers. The second cultural problem that affects our project is the lack of understanding within the culture of mental disabilities. Not only do people not know about autism, but their culture generally is not very responsive to mental disabilities. A lot of different mental disabilities with varying needs are grouped together, which makes it harder for families to seek care for their loved ones. Finally, the last cultural issue that affects the progress of our project is the idea of “returning a child to God”. There is a perception that if a child is born with a disability they are “imperfect” and must be “returned to where they came from, heaven”. Sadly, this results in many deaths of children with disabilities. Instead of addressing the issue some families opt to kill or neglect their children, a very serious and upsetting cultural issue. 

 

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

Although with not exactly the same context, I have also experienced misperceptions about disabilities here in the United States. I have had conversations with parents who have told me they have opted out of vaccinating their children due to their belief that vaccinations can lead to autism. This belief has been disproven by countless scientists, yet it seems that this misperception is still held by many people. This continues to perpetuate stigmas about autism. Furthermore, I have observed examples of families who don’t pursue appropriate care for their children due to a lack of resources. Autism is known as a spectrum, and many families don’t recognize that their child has autism as they have misperceptions of what autism is. Furthermore, some families don’t have the resources to properly care for them. Although here in the U.S. there isn’t a practice of “returning children to God” there may often be misperceptions from families about whether or not they are to blame for their child being diagnosed with autism. Although there seems to be a bigger understanding of autism in the U.S. due to more education and advocacy groups bringing awareness, there are still many misperceptions that occur. This shows us that the issue is not only in low and middle-income countries but also in western countries. Although our project is based in Sierra Leone this shows us that there is a lot of work to do everywhere, and through the knowledge that we gain in this project, we can continue to help spread awareness in our hometowns and to the Lehigh community. 

 

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

Cultural practices within Sierra Leone that can be leveraged to address the community include:

  • Family Values: Sierra Leoneans value family and kinship. These values make them a society that values the community rather than the success of an individual. These values can be used to aid our mission and project as we aim to build a system that will not only help individuals with autism but the community as a whole. This can also help spread our mission throughout the community in which we will be based. 
  • Polite Culture: The people of Sierra Leone also have a very polite and formal culture. When engaging in meetings or other events, citizens will engage and interact with others in a very formal matter. This will be important to us when working within the field. If we engage in a very formal matter too, our project will be taken more seriously and with more importance. 
  • Management of Other Crisis: In the past, the country has been shaken by other crises. For example the Ebola outbreak in Western Africa. The country employed a system in which they trained workers who then helped to educate locals. This spread the level of education from professionals to everyday citizens. This was crucial in taking steps to raise awareness about the virus. This can be used by our team when working in the country. If we can help train workers who will then employ what they have used within the community, we can begin to build a self-sustaining system.

GSIF Blog Post January 24 2020

Grace Enriquez

January 24, 2020

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

I enrolled in the Global Social Impact Fellowship program after hearing about it through my advisor. Originally, I was interested in learning about the separate projects Lehigh students were participating in, as I am interested in social work abroad. Furthermore, being an International Relations major has given me an appreciation for the connections between countries, cultures, and citizens; which is why I was excited to learn about an opportunity on campus that incorporates the three. Upon researching the different projects, I was skeptical to apply, as all of the projects were in different areas of study than what I was used to. Yet, ultimately, I was inspired to venture outside of my comfort zone and pursue passion instead of comfortability. I chose to apply to the Diagnosing Autism in Africa project, as I have had around five years of experience either tutoring or volunteering children within the classroom setting. I have had first-hand experience regarding the importance of incorporating and caring for students with disabilities in schools. Studying the situation within Sierra Leone encouraged me to apply as I felt I could contribute my efforts towards a long-lasting cause. 

 

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

I envision this course making me a better student in multiple ways. It has already pushed me out of my comfort zone and has made me step into a role I am unfamiliar with. Furthermore, I believe taking this course will allow me to receive a more complex understanding of how to tackle systematic problems, a skill that is not often taught within classes. I also expect to grow as a speaker, as I will have to be able to present and articulate my ideas clearly during presentations. I hope to also grow as a listener. I believe this course will help with that by placing me in a situation where I have to listen closely and really understand my teammates in order to progress with our project. This skill will be useful to me when conducting interviews within Sierra Leone. 

 

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?

In order to begin to combat the issue, I propose to introduce non-profits or NGOs to educate citizens on failing eyesight, to provide local clinics with supplies, materials, and trained optometrists to begin to prescribe and distribute glasses, and to stress the importance of wearing eyeglasses in order to reduce the social stigma surrounding it. It is necessary to begin with education on the issue, as many people are not aware that a problem even exists. Additionally, the people who are aware of an issue may not realize the severity of the problem due to a lack of knowledge. Often times, individuals will neglect vision problems until the condition is serious enough to need corrective surgery. If civil society, like local NGOs or non-profits, were to begin to illustrate the severity of the issue and emphasize the importance of getting one’s vision tested, individuals who otherwise thought blurry vision was normal may be inclined to visit an eye center. Although funding will not solve the systemic issue found within many countries, it is imperative to have enough funds to begin to address the problem at its root. Especially since the leading cause of many people failing to receive care is poverty and lack of access, to either travel to clinics or the cost of diagnosis and treatment. It will allow for individuals who are in dire need of glasses to receive care before their condition worsens. It is especially important to provide care as often as possible, as it will not only lead to the prevention of serious problems, but it will promote eye care early on. After receiving glasses and experiencing improved vision, people will be more inclined to continue visiting optometrists as time goes on. It is then important to have medical professionals who can train local workers at hospitals or clinics. Training local citizens will decrease dependency on outside help and will allow for progress within the country to continue. Distribution of eye wear will also begin to normalize care for one’s vision. Perhaps one of the most important steps in addressing the problem is reducing the social stigma around eye care and bringing about awareness. In India, women are reluctant to wear glasses for fear no one will want to marry them. Furthermore, in countries where only a few individuals have glasses, people who have just begun to wear glasses may feel uncomfortable or alienated. It is important to continue education regarding the importance of eye care as it will help address these stigmas. Bringing about continued awareness will also attract the attention of civil society. If we continue to raise awareness about the problem, NGOs and non-profits will be more inclined to help address this issue. Taking these steps is important as it will allow for productivity and the standard of living to rise within these countries.