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Support Networks for Neurological Conditions on Google Maps, in Nairobi.

The idea is to create a mapping service that targets families dealing with a recent diagnosis of a neurological condition in their family. When a child is first diagnosed, usually the first reactions are denial, anger and confusion. Support networks often provide a platform through which parents and families can accept the condition of their child and begin to give the child the help they need to ensure they survive and thrive. The mapping service shows the parents/ families in Nairobi where they can access such support networks or facilities. This involves creating a layer on Google maps in Nairobi or an app, that one can select to show them where these support facilities, networks, groups and centres are and their information.

Photo of Cindy Obath

Written by

After feedback from sessions at iHub Kenya and from people on social media sites such as facebook, this idea has been amended. 

INITIAL SETTING: 

"Meet Mary.She lives in a low income area called Mukuru, next to Industrial Area, in Nairobi. She's given birth to a beautiful baby girl who's been diagnosed with Cerebral Palsy. Mary's Daughter is just 16 months old. Upon learning of this diagnosis, the father of the child left her, claiming she had been betwitched and did not want it to affect him. Mary is in a state of despair and denial. Her younger sister, who studies at the University of Nairobi, tries to help her by searching for information on Cerebral Palsy in Nairobi, using her phone. A google search gives her the option to select a map called 'Cerebral Palsy Information'- available on Google Maps. She accesses it, and a map appears that gives her information on hospitals, clinics, support groups, organisations, schools and professionals in her area that can help her sister. She reaches out to them and within a few months, Mary begins to bounce back after having accessed the necessary facilities that will help with the management of her child's condition."

Cerebral Palsy is the leading cause of disability in Kenya, yet the general public knows very little about it.Consequently, when a child is diagnosed with Cerebral Palsy, there is othen a negative reaction towards that child and suspicions of witchcraft are often aroused. This is the same for other neurological conditions such as Autism or Dyslexia.For a parent in this situation, it is important for them to have access to as much information on the various networks, facilities and services available to them. This idea aims to do just that by putting all this information together and geographically referencing it for use on Google Maps so that information is not only available on one platform, but the best choices can be made based on geographical proximity.

The mapping service will work just the same way Google Maps works. When someone accesses Google Maps, they will have an option for 'Neurological Condition Information'. When selected,  A layer will load that will show geographical locations of suppot networks, and other information such as contacts, number of people and meeting times/dates.It will also load other information that will be useful to parents such as health facilities, therapy centres, schools that cater for children with special needs.

Kenya has a significant number of internet and smartphone users, as indicated in this 2014 article:
https://regulusweb.com/articles/a-new-wave-of-web-users/ .
However, in low- income areas, access to smartphones can be difficult. Based on suggestions from the iHub meet up session in Nairobi on Thursday, we were led to a concept used in rural areas in Congo- Schools have a smartphone available for use by parents, loaded with the necessary information such as information on hygiene and sanitation.
This idea would then combat the issue of access to the internet and Google Maps by supplying either schools or religious centres with low- costing smartphones with the Google Maps app containing the support information needed and also other information pertaining to neurological conditions.

We think this will succeed for various reasons. Firstly, the use of the internet and services such as Google Maps is high and common in Kenya, particularly Nairobi. Secondly, a significant number of people have access to smartphones and the internet. Thirdly, networks provide the basis for many activites in Kenya, such as saving/ investing money in groups/organisations called 'Chamaas' or 'Saccos'. We believe support networks providing all the necessary information for Cerebral Palsy and other neurological conditions can be another network that can be leveraged by potential users. 

Update:
After a study was conducted in Mukuru (results on the right hand side of this page) and the results reviewed, the idea remains mostly the same but access to information would be as follows: 

Based on the number and location of mothers in the area, a central location will be identified. Once the smartphones have been made available in the  best location, chosen by the mothers in the area, they (the mothers) would then be in charge of keeping that phone recharged with airtime to access the internet/buy bundles to access the internet.   Every week, mothers in the area will collect about 10KSH or more (this depends on what they agree on based on their usage of their phone) and use the collected sum to buy airtime or bundles to access the internet.The schools will retain the phone at all times and make it available to the mothers in the area. To help ensure this, every school that has a phone will make a register of the mothers who have access to that phone in that area. This register will allow for easy collection of money and can aid in accountability issues regarding the use of the phone.

 

Who will benefit from this idea and where are they located?

This idea is designed for any person with access to the internet or a smartphone and wishes to access these support groups, in Nairobi County. However, the main target market for this idea is mainly mothers in low income areas who do not have easy access to this information in their areas.

How could you test this idea in a quick and low-cost way right now?

UPDATE: I previously had suggested that a survey could be done which would determine the access to information and smart phones in the area, and to assess the potential response to the idea in their area. Based on a meeting at iHub almost 2 weeks ago where I got feedback about the initial Idea. To further on the feedback I was given, a preliminary study was conducted in Mukuru, where 9 mothers of Children with Cerebral Palsy participated in a survey to find out what sources of information they first used when their child was first diagnosed with Cerebral Palsy. The survey questionnaire and the results results have been uploaded in a word document on the right hand side of this page. The results show that mothers of children with Cerebral Palsy, and therefore mother of children diagnosed with a neurological conditions, would appreciate information being kept in a central location such as a church, clinic, school or support group. However, none of them had access to smartphones, which would require that smartphones be bought or donated and made available at public places such as a school, which most mothers preferred. I intent to conduct the same survey in January with the Cerebral Palsy Society of Kenya that services parents in Donholm, Kayole, Pipeline and other surrounding areas, when families come back into Nairobi after the holidays.

What kind of help would you need to make your idea real?

We would love to get as much expert advice and feedback from the OpenIDEO community as possible to make our idea real. We would also need partners to make the idea a reality, specifically Google, because we wish to create the information available on the Google Maps platform. Should we choose to develop the application ourselves, we would need assistance from software developers to create an application that would be easy to use, yet contain the most information. Partners such as a telecommunication company like Safaricom, would be crucial. These partners could make the application available for free and also waiver internet charges for application access to ease the monetary burden for mothers with regards to accessing the application Surveys show that the mothers do not have access to smartphones and therefore we need to purchase smartphones that will be accessible at a central location that parents can access such as a church or a school. The number of smartphones will depend on the population or the area versus the schools/ religious centres in the area.

Is this an idea that you or your organization would like to take forward?

  • Yes. I am looking for partners that might be interested in taking this idea forward in their communities.

18 comments

Join the conversation:

Comment
Photo of Moses Wachira
Team

Good job Cindy. This is an excellent platform for easy access to info concerning Cerebral Palsy. Is psychological counselling for the parents inclusive of this, perhaps in the local clinics or health centres?

Photo of MUGAMBI MWALISHI
Team

Hello cindy, I wanted to mention that we successfully managed to raise 307 euros by crowdfunding online. this was successful by keeping the funders engaged and reaching out to our vast network.
307 compared to what other projects at the one percent club is low. most crowdsourcing ideas are usually on the 10,000-15,000 euro bracket. My team felt that 300 euros was a start since the Sifasafi market cleaning project is still a new concept. you can check out the crowdsourcing page here https://onepercentclub.com/en/#!/projects/sifasafi-cleanup

Photo of Cindy Obath
Team

Hi Neville. I will definitely check it out an give it a try. Thanks!

Photo of An Old Friend
Team

honestly I give the idea 8/10. its a brilliant idea. i still think more needs to be added, i.e other groups, not only c.p, probably widening the scope,not limiting the target audience. what do you think? .

Photo of Cindy Obath
Team

When you say 'widening the scope', how would you suggest we do this? I'm assuming you mean including other diseases and conditions? If so, which ones? A cluttered map can cause valuable information to get lost, especially if someone is looking for something specific. What can be done, alternatively, is create several layers for several medical conditions or diseases.

Photo of Anne Riitho
Team

I agree, widening the scope of diseases included could be extremely beneficial. As Cindy mentioned, creating several layers would be one way to address this. Perhaps the CP layer could be used as a pilot for what could come in the future.

Photo of An Old Friend
Team

yes, cp can be a litmus. well said.

Photo of An Old Friend
Team

CP I believe requires rehabilitative therapy, the plat form or the layers that I probably think should be in this category fall strictly on rehabilitative or tertiary treatment, conditions like spino-bifida,hydrocephalus, ADD and other congenital conditions that require or have the same kind of rehabilitative treatment that is wanting in most 3rd world countries, should be included. C.P should be great pilot.

Photo of Cindy Obath
Team

I decided to change the focus to 'Neurological conditions' for the following reasons: I agree with increasing the scope. I thought that increasing it to Neurological conditions would allow us to begin to increase attention towards the severely under-addressed issues that neurological conditions raise. Secondly, CP falls into this category, and most of the rehabilitation centres and programmes are similar, as you had mentioned above.

Photo of MUGAMBI MWALISHI
Team

Great choice of words there. the solution will be able to engage more kids.

Photo of MUGAMBI MWALISHI
Team

I have seen how some support networks work. And this would be a really good idea for parents exposed to this disease. It is sad that very few support networks get the financing required and support from the govt to run their operations.
Locating support networks affects many. I have seen a number of rehabilitation centers have the same problem of tracking down and finding out if they quit the habits...AA(Alcoholics anonymous ) and NA(Narcotics anonymous) teams that they normally have or run... being able to give information and mapping these support networks will have to start somewhere. Start here

Photo of Cindy Obath
Team

Hopefully, the mapping will give the government the information they need to effectively and efficiently support these groups.

Photo of An Old Friend
Team

Very thoughtful,and unique. brilliant even-but my questions start to crystallize; after this, then what? Don't get me wrong, I am simply putting my self in shoes of a mother having a child with c.p in Mukuru kwa Rueben, or Majengo. Financial and logistics questions. ! Can Google maps add more information relating to the services provided or other facilities providing other services for diversification purposes?
Hope to see you next time, on the group meetings for clarification purposes.
Kindly involve me in your fine tuning process Remember, you are the brains of the group and all hopes are on you.

Photo of Cindy Obath
Team

Maina, Thanks for that. To tackle some of the questions you are asking: Yes, Google Maps can put more information and we also can map out facilities.

When it comes to the other issues of logistics and finance, this idea addresses them by giving them the information they need to determine where the best places are for them to seek support and to access various services. 'Best', in this sense, is expressed in proximity and capacity of the support group or centre.

Photo of Meena Kadri
Team

Your initial lightweight experiment sounds like a great start – and we hope you make progress with this and report back and share learnings here towards evolving your idea further. Pay special attention to what is surprising, challenging and successful. Here's more tips: http://bit.ly/pr0totype

Perhaps you might also consider helping people better grasp how this idea could play out by describing some example scenarios which describe user journeys through some of the proposed activities you've outlined. Check this example: http://www.openideo.com/open/e-waste/concepting/neighbourhood-e-waste-champion/ where a few simple scenarios were created in an attempt to explain the goodness on the idea in a human-centered way. (You can update your post at any time by hitting the Update Entry button up there on the right.) Through doing this we'll be able appreciate your idea through the lens of people in low-income communities.

We additionally hope you'll join in on discussion on others people's ideas here at OpenIDEO. Your perspectives would certainly enrich our conversations and collaboration...

Photo of Cindy Obath
Team

Thank you Meena. I will post some scenarios that should illustrate the idea better. I look forward to contributing...

Photo of wekesa zab
Team

Halo Cindy.
Am loving this idea. I have some concept ideas from Jhpiego .. Lemmi trace them the will share ..exciting to have u join in on the platform . looking forward to some awesome collaboration..

Cheers.

Photo of Cindy Obath
Team

Thanks, Wekesa. I loo forward to seeing your concept ideas and collaborating.