Show me the Data

Happy World Health Day!

One of the biggest challenges facing the international disability organizations has been the lack of good data. Data helps organizations know what the major problems are that need our attention. It also helps them assess whether their efforts are having the impact they are aiming for. Data also helps funders know where they should channel their resources and what program designs are proven to be the most effective.

The problem is that persons with disabilities have been largely forgotten in mainstream global health and development programs. This leaves both programs and funders at a loss about what to do.

As the UK’s International Development Minister said, “ Until we have more concrete evidence on disability, it is far too easy for governments and others to continue to ignore the people who are already some of the most neglected in society.”

This creates a vicious cycle. We can’t  easily get data if people with disabilities are not included in international development programs. But too often no funding or support is not available for disability inclusion without good data.

At Mosaic International, one aspect of our mission is to work with our partners on generating data to help fill this evidence gap. As part of PROMOT, the preventative healthcare program we support with our partner in Tanzania, all children and young adults in the program are able to have an annual health screening. They get a physical exam, full blood picture, urine sample, and stool sample. They receive treatment and any necessary medications from the hospital right after the screenings, which means that conditions identified can be “nipped in the bud” before they become even more serious or even life threatening. But also, the results from these screenings provide our program with important data.

So just what are the major health problems being faced by children and young adults with disabilities in the Building a Caring Community program in Tanzania? Below is the graph that Godson Mmary, the Clinical Coordinator, prepared from the results of this year’s screenings.

graph

  • 34% were found to have a UTI
  • 31% had Aspiration pneumonia
  • 27% had worm infections
  • 13% had malnutrition
  • 5% had amobiases (an amoeba in the intestines and cause of diarrhea)

Other problems that came up less frequently during the screenings included ear infections, skin problems, and dental cavities.

We can look at our data and compare it to what else has been published by others. Some of these health problems UTI’s have been found more often in children with cerebral palsy in other low-resource settings (Anígilájé and Bitto, 2013; Singhi 2001). We also know some of our children, especially those who have swallowing difficulties, are more likely to choke on their food and get aspiration pneumonia. Malnutrition is also a major concern because it is an underlying cause of 60% of child deaths worldwide (UNICEF, 2007) and also can lead to impaired physical and mental development (UNICEF).

Equipped with this data, we can make informed decision about what to do next. We can also use this information when talking about the needs in the program. We have information from several years of screenings demonstrating that malnutrition is a persistent problem, which trainings on healthy food choices alone has not completely solved. We found donors who were interested in contributing to health programs in Tanzania and we told them about some of the health issues we faced like malnutrition. They donated the funds to provide the children at the centers who have severe malnutrition with supplemental nutrition that is calorie and nutrient dense. This supplemental feeding is combined with with improved staff and parent trainings for a holistic approach that both treats the immediate need and looks forward for a sustainable solution. Godson is working closely with staff and parents on healthy cooking workshops, finding ways to increase the nutritional quality of traditional foods and recipes. More information on those coming soon!

Beyond nutrition, the results of this year have helped determine other health trainings on topics from sanitation and toileting for children with disabilities to proper positioning during feeding. These and post-training follow-up will hopefully help prevent some of these health problems in the future. We are working with Godson and the BCC team to continuously monitor progress and key health outcomes for the children and youth we serve. In this way we can see if our efforts are making the impact we want and where we can do better.

This is the power of data. Entrepreneur and philanthropist Bob Parsins has said, “Anthing that is measured and watched improves.” We believe that by incorporating measurement and monitoring of the health outcomes within our programs, and then sharing this knowledge, we can help improve not only the health of those we serve, but the disability-inclusiveness of global health.

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