ekulture - Mobile solution for parents to screen, diagnose, and provide intervention for children with Autism in Uganda
Due to lack of diagnosis and awareness, Autism is often labeled "cursed" or "possessed." We can change that using simple mobile phones.
What problem does your idea solve?
In Uganda the severe lack of awareness and diagnosis of Autism has forced parents to rely on deep-seated cultural beliefs that label the condition as “cursed” or “demon possessed.” Instead of seeking medical intervention, parents subject their child to the inhuman practices of witchdoctors.
We can change this. Using simple mobile phones parents could screen their child, track milestone, receive support and access online trainings, thereby increasing early diagnosis, intervention and acceptance
Explain your idea
Rose has a three year old son, Enock, who acts differently than her other children. He rocks and flaps his hands. She is too afraid to ask her friends or family. While in a taxi she sees a sign that says many children have disabilities and parents may be unaware. She thinks of Enock.
Step 1: Rose sends SMS "screen" to the short code on the ad. In return she receives 23 “yes” or “no” questions via SMS. This tested questionnaire was developed based on key indicators of certain disabilities. Rose’s responses are collected and analyzed real time.
Step 2a: If Rose’s answers do not indicate a disability she will be encouraged to continue to track her child's development. Rose will receive periodic text messages of developmental milestones, at the appropriate milestone ages (e.g. 3 months, 6 months, etc.). If her child misses any milestones she will be alerted, as will a medical profession who can follow-up for diagnosis.
Step 2b: If her answers indicate Autism, Rose will receive a notification and a follow-up phone call for diagnosis. She will also receive a link to the ekulture solution, a mobile web platform designed for low-bandwidth, low-end phone distribution. The ekulture solution provides trainings for at-home interventions, emotional support and advocacy. The ekulture solution was piloted in 2016 to 200 community members, resulting in an increase in knowledge (pre vs. post test) and significant change in attitudes and perception
This slideshow details our typical user experience, with the captions outlining our first iteration with the key questions for gathering feedback.
Question: What does a parent first notice in their child that leads them to traditional healers?
How to test: We have been actively gathering feedback for over a year to understand why parents seek traditional healers and what are key indicators that make them realize their child may have a disability. We have conducted interviews with a spectrum of parents, from those who received diagnosis to those who hide their child.
Question: What messaging and channels will engage parents and result in a screening?
How to test: A working group with marketing advisors will craft a message. Then we will follow a sample of parents for a day to get a sense of what they are exposed to and potential marketing channels. We will also try channels that have been effective in other health programs including "announcer trucks" and banners in taxis. We will follow up with a sample exposed to the message to for feedback.
Question: Will parents engage in the SMS survey?
How to test: The 23-question survey will be translated into an SMS solution using TextIT (SMS flow) and Africa's Talking (short-code). The working group will develop the messaging to introduce the questionnaire and messaging of results. A village in Entebbe will be selected and a table with a sign for screenings will be set up. Team members will work one-on-one with those who approach to walk through the screening and gather feedback.
Question: Will the screening be effective?
How to test: The screening questions were piloted in 2013 to 1169 children. The working group will refine the questions, advised by the previous researchers. A small group of parents of CwDs and without disabilities will be given the questions and asked for feedback. We will follow up on positive screenings through diagnosis. Once we hit 1000 screens we will invite a sample of those who screened positive and negative for diagnosis and compare.
Will parents choose to take trainings after a positive screening? How to test: We will create a user database using the parent's phone number and child's name as unique identifiers. Each parent will have an account, which will allow us to quantitatively measure which parents are following the trainings. We will then call a sample of users across different levels of usage.
Question: How will parents react when they receive a positive screening? How to test: The working group will create a script for Stephen, a member of the embraceKulture staff. It will be reviewed and refined by a support group of 10 parents who have a CwD. Later, from a sample Stephen has already called, a mother will also follow up for feedback on Stephen's call to understand emotions, reactions and outstanding questions.
Question: Will a parent pursue diagnosis after the screening? How to test: We will follow up one week after a positive screening, then periodically with the doctor and family to see if they have pursued diagnosis. Feedback will be collected on why or why not. The user management database will be updated indicating if user received diagnosis or not, using phone number and child name as the unique identifiers.
Question: How will information flow from diagnostician into the process after diagnosis to ensure appropriate follow up with parents?
How to test: From feedback we learned that the sensitization is most effective the closer it occurs to diagnosis. We will need to set up a referral flow to diagnosticians and back so follow up can happen immediately. We will hold a small session with the diagnosticians we are currently working with to draw potential flow diagrams.
Question: Will parents be open to the sensitization message and pursue resources?
How to test: A working group of persons experienced in sensitization (Hawa, Stephen, Antonnatte, Modesta and Edith) will develop the script for follow-up calls immediately following diagnosis. embraceKulture has a referral program with many service providers in the area. We will need to establish a communication flow with them to ensure they have space (e.g. we want to refer to a school that can take new students)
Question: What is the impact of the trainings (knowledge, attitude, perceptions)?
How to test: eKulture collects data like new/repeat users, trainings taken, time on trainings and post-assessment results. Periodically a random sample is given pre-assessment before a course with results compared to post-assessment to measure impact. In addition, we will call a sample group (active vs. one-time users) to learn about their experience.
1. Question: Will a parent be willing to enroll their child, which requires publicly acknowledging the child, and believe that the child is capable of learning enough to be worth the school fees? How to test: The eKulture training program addresses the importance of education and includes a referral section for schools. Based on data in the user database we will track which students are in school and follow up with parents to understand why their student is or is not enrolled.
Question: Will a parent be willing to enroll their child, which requires publicly acknowledging the child and believing that the child is capable of learning enough to be worth the school fees
How to test: The eKulture training program addresses the importance of education and includes a referral section for schools. Based on data in the user database we will track which students are in school and follow up with parents to understand why their student is or is not enrolled.
After collecting feedback, the team came together to analyze and adjust user experience maps.
There are three phases to the ekulture solution: (1) SMS screening - Parents answer 23 questions that indicate disability, leading to an in-person meeting with a diagnostician if positive, (2) SMS Milestone tracking - if no disability is identified, enables continuous tracking for early diagnosis, and (3) Mobile web platform for parent training. The SMS features are in development/design phase. The mobile web platform has been piloted and tested and is in iteration.
WHO estimates there are 117,340 children with Autism in Uganda alone, yet only 6,909 children in primary schools are diagnosed with Autism (2007, DFID). This indicates a severe under-diagnosis and exclusion. Focusing on teachers or children in school ignores the larger issue.
We instead focus on parents, the key beneficiaries, who lack access to diagnosis, information and trainings. We look to involve parents in every step of the development of our solution from content to design.
Fiona has Autism. Her mother couldn't get her to eat. She used to hide the child. But Fiona had become too loud and "wild." Late one night, she abandoned the girl at the gate of the L'arche community. Even in the main city of Kampala, the mother never received the diagnosis of Autism. The child was abandoned, severely malnourished, and non-verbal.
Parents gather in our parent support groups to learn income generating activities, advocacy, disability information and at-home intervention. When they go home they use the ekulture mobile solution to supplement the group meetings.
Ronald is a boy with Autism. Using eKulture his parents are able to provide at home therapy and support.
Ketty had Down Syndrome but no one in her village had ever heard of that before. Instead they thought she was cursed. When a drought struck her village they blamed the "cursed" child and tried to kill her. Rose, her mother fled with the child and heard of embraceKulture. She came to us for support. At age 11, Rose was finally told her daughter had Down Syndrome. Rose broke down crying. Then she smile. Even she had thought the girl was cursed. Her first question was "Can Ketty go to school?"
How is your idea unique?
1) We address the negative stigma by addressing the key issue of lack of awareness. Current interventions focus on in-school children or diagnosed children. Our solution focuses on the much larger issue of lack of diagnosis and access to information.
2) Mobile phones have never been used as a tool for diagnosis or tracking development. To date successful interventions have relied on training of “informal” diagnosticians, typically local leaders. A critical error is parents do not recognize Autism as a disability and hide the child. Building on concepts of successful m-health intervention for pregnancy tracking, our solution enables parents to track the development of their child to identify a medical condition before a children receives the negative label or is hidden. Diagnosticians then follow-up on identified children instead of searching for them, significantly increasing reach and reducing cost.
3) The ekulture solution empowers parents to train themselves in their own homes
Tell us more about you
We have put together a strong, dedicated working group of experts and users (see “Tell us more about you”). Antonnate, who has a daughter with Autism, is our newest addition. We interviewed her and her feedback was invaluable. We knew we needed a mother on the team and she was eager to join. All are in Uganda.
Voices of Africa, a partner in Kenya is helping redesign user interface with the mobile web platform.
International advisors include Nilofer Naqvi, PhD and Judith Grether, Phd
Antonnate Amooti Nyangoma is a mother of a child with Autism. She tried many traditional methods to help her child. In her words "I did all I was told as a mother, I got saved, I slept on mountains, I went to witchdoctors but my daughter never talked." When she finally went to a doctor she was told her child had Autism. The doctor offered her no information for intervention and referred her to Google for more support. With embraceKulture she is an advocate for increased awareness and acceptance.
The embraceAbility team is a team of Uganda's leading entertainers who use their social media and traditional medial presence to raise awareness about cognitive and developmental disabilities such as Autism. This group is prepared to help spread awareness of the ekulture solution.
Dorothy Nambi is the founder and Director of Dorna Center for children with Autism. Dorothy developed a passion for children with special needs when she realized her own son was a slow learner. She opened Dorna Center in 2012 to address a severe service gap she saw in Uganda for children with Autism.
Angelina Kakooza is a senior researcher at Makerere University in the Department of Paediatrics and Child Health. Her research has focused on pediatric epilepsy, autism and cerebral palsy. Dr Angelina Kakooza obtained her MB.Ch.B degree at Makerere University College and her doctorate in Medicine in the field of pediatric neurology as a joint degree between Makerere University College of Health Sciences, Uganda and Karolinska Institutet, Sweden for the dissertation on Cerebral palsy.
Dr. Catherine Abbo is a Professor a Makere University. One of her relatives has a mis-diagnoses mental health condition, for which he never received proper diagnosis or access to a necessary psychiatrist. This ignited a passion that would lead her to become the first female psychiatrist to hold a PhD in Uganda. Often publish, her research has focused on psychological distress resulting from traditional healing practices on persons with Autism and other mental health issues.
Christa Preston, Founder of embraceKulture, left a position leading Silicon Valley's largest technology acquisitions to work with children with severe learning needs in Uganda. Her background presents a unique dichotomy of technology and development that has enabled her to create mobile innovations featured by USAID and MIT. In 2016 she was selected as an Ashoka Changemaker and one of 50 delegates chosen for the American Express Leadership Academy.
What are some of your unanswered questions about the idea?
Both the questionnaire and ekulture solution have been piloted individually, though not as a singular solution, with statistically significant results. Our unanswered questions focus on our ability to scale. They include:
1) How to market the solution/increase user base
We need to determine channels to market to parents. Our initial thoughts are public transportation signage, existing parent networks, healthcare networks, local leaders, and celebrity endorsement (embraceAbility).
2) How to manage sustainability as we scale
To achieve scale we need to manage cost (charge-back SMS and toll-free number) and personnel providing the follow up call. We are exploring solutions such as ad and referral revenue and Parent-intervention
Where will your idea be implemented?
Experience in Implementation Country(ies)
Yes, for more than one year.
Expertise in Sector
I've worked in a sector related to my idea for more than a year.
We are a registered non-profit, charity, NGO, or community-based organization.
Prototyping: I have done some small tests with prospective users to continue developing my idea.
How has your idea changed based on feedback?
Mama Maria seemed like our perfect user. Without awareness she delayed in diagnosis of her son. After she could only afford a few therapy sessions, tried to replicate at home and wants to learn more. But Mama Maria can't speak or read english, unexpected as she lives in affluent Entebbe. We are changing our MVP and pilot to be in two languages, English and Luganda. We can then reach the majority of Entebbe mothers and test the implication of languages, income, education and urban/rural. As we scale we will use a pre-recorded messages and toll-free lines for illiterate parents to screen children.
Mama Jennifer told us how Mama Jamira had encouraged her when her child was first diagnosed. The role of other mothers in the initial sensitization phase is clearly critical. After diagnosis parents will be referred to a parent support group both local and virtual. As we scale, we'll explore parent-interventionist programs to empower mothers to drive follow-up and intervention post-diagnsis
The user story was discussed with parents, medical officials and special needs teachers through one-on-one interviews led by Christa, Stephen and Hawa. The group came together to discuss feedback and refine the solution.
Based on feedback we have developed a road map detailing the a series of “escalating studies” (similar to sprints), which are a combination of product / feature launches and follow-on user studies. By escalating the size of users in each pilot we are able to gather feedback, learn and iterate.
The team went into the field to hold one-on-one interviews with parents with children with disabilities, parents without, special needs teachers, social workers and medical professionals to understand their experience with disabilities. After feedback was collected the idea was exposed to some select members and discussed for additional feedback and refinement.
Pages upon pages of notes were collected from one-on-one field interviews to gather user feedback.
Feedback revealed interesting themes in at-home interventions: 1.Low income parents of children with disabilities (CwDs) were most concerned with income generation. 2.Middle/high income parents of CwDs were more interested in paying for services than providing themselves. 3.Low income parents were more likely to pay for therapy in the beginning but switch to at home intervention. As we scale, we could solve for this by leveraging a Parent-Intervention training program (PI) to follow diagnosis.
Based on research, parent intervention programs have become a critical tool for Autism intervention in developing countries at the community level. To develop we could leverage successful models from India and Palestine. Based on conversations, their success has been driven by a rigorous screening process for enrollment. With our mobile data collection, we will be able to see the most active parents and invite them into the program.
From feedback, parents were seeking information and interventions immediately after diagnosis. This was the most time to begin the sensitization process. Many tried therapy or counseling and paid for services (30,000 to 50,000 shilling). The top three reasons they stopped were (1) Too expensive (2) Too difficult to transport their child and (3) Preferred to try the therapy at home. Our mobile training allows for immediate intervention by parents. Then PIs could provide critical follow-up.
The cost of the PI certificate program could not only cover the cost of the training program but also the additional costs of the entire solution (e.g. chargeback fees for SMS). The PI program still has many open questions and would not be pursued until we shift to growth focus for the ekulture solution. We include it here as acknowledgement of the broader concerns parents reported, beyond diagnosis and information, and as an example of avenues we have to scale and achieve sustainability.
Who will implement this idea?
We have put together a strong and dedicated working group of experts and users (see “Tell us more about you”). Antonnate, who has a daughter with Autism, is our newest addition. We interviewed her and her feedback was invaluable. We knew we needed a mother on the team and she was eager to join. All are in Uganda.
Voices of Africa, a partner in Kenya is helping redesign of the interface with the mobile web platform.
International advisors include Nilofer Naqvi, PhD and Judith Grether, Ph
Using a human-centered design approach, you may uncover insights that lead to small or foundational changes to your organization’s existing strategy or processes in order to unlock the potential of your idea. How would your organization go about making such changes?
embraceKulture develops programs using an iteration loop, 1. Gather feedback 2.Brainstorm 3.Research 4.Develop with a working group 5.Test. These steps are repeated as the size of the testing groups increase. Throughout the process we directly request for criticism/challenges
This program will undergo a series of “escalating studies” (similar to sprints), which are a combination of product / feature launches and follow-on user studies. Because many of the learnings will involve content adaptations and changes, the platform is built with an easily accessible administrative content management backend. This allows non-developers to iterate on content and delivery, while keeping a fluid product roadmap as we learn.
What is it that most attracted you to Amplify instead of a more traditional funding model?
We chose to participate in this challenge because Amplify provides:
- Opportunity for collaboration with a pool of innovators focused in one issue area, thereby enabling creation of a holistic system
- Alignment on our anthropological approach (listen first, people first)
- Access to tools to develop real skills we are actively using to improve our product/service offerings
- Ability to iterate, pivot and adapt as we learn
- Advice from mentors/coaches to help us move from pilot to scale
What challenges do your end-users face? (1) What is the biggest challenge that your end-users face on a day-to-day, individual level? (2) What is the biggest systems-level challenge that affects your end-users?
There are several profiles of parents (income, education, and urban/rural) making it difficult to generalize, but some common themes/issues emerged including:
-Financial – paying for the daily needs of their family and increased needs of CwD
-Unemployment – unable to hold a job because of the care needs of their CwD
-Cultural stigma – outcast for having a CwD
-Single parent – mothers are commonly blamed and abandoned for having a CwD
The biggest systems challenge is lack of awareness and diagnosis. Families all reported delaying diagnosis due to lack of physical manifestation creating reliance on cultural stigma and local healers, causing lack of statistics and overall resulting in a severe lack of services and feeling of exclusion for families.
Tell us about your vision for this project: (1) share one sentence about the impact you would like to see from this project in five years and (2) what is the biggest question you need to answer to get there?
By 2022 we aim for 1 million screenings, driven by collaboration with Ministry of Health, 100,000 children diagnosed, 65,000 users on the training/information platform throughout East Africa, and mounting evidence of decrease in abusive traditional practices due to diagnosis.
Question:Given that progress for children can be considered “slow” how do we maintain momentum of parent networks to keep parents engaged after their the initial sensitization phase leading to a long-term sustainable model
How long have you and your colleagues been working on this idea together?
Between 6 months and 1 year
How many of your team’s paid, full-time staff are currently based in the location where the beneficiaries of your proposed idea live?
Under 5 paid, full-time staff
Is your organization registered in the country you intend to implement your idea in?
We are registered in all countries where we plan to implement.
My organization's operational budget for 2016 was:
Between $50,000 and $100,000 USD
If your team/idea/organization has a website, please share the URL below.