Spatial Mapping

This was a cross-sectional study carried out in Eastern Uganda focusing on persons with albinism. Spatial mapping was done using Tablets with GPS (Global Positioning System) capabilities. Household and organizational characteristics were captured using a digital structured questionnaire, using ODK (Open Data Kit)-Collect application. Perceptions of persons with albinism were gathered using in-depth interviews and analyzed based on the ecological model.


The main aim of this research was to create a database through the mapping of all persons with albinism and organizations serving them in the selected districts. We also determined perceptions of persons with albinism towards the communities they live in and the community perception towards them.


Results revealed that Sironko (20.2%), Bududa (17.9%), and Manafwa (17.5%) had the highest number of persons with albinism. Most respondents (56%) in households with Persons with Albinism had primary level education. The main reason for dropping out of school was the lack of school fees. More than two thirds (67.7%) of the respondents did not know the cause of Albinism.
Access to and cost of sunscreen remain a major challenge. 86.3%) of Persons with Albinism do not have access to sunscreen. In addition, (75.7%) of Persons with Albinism had an eyesight problem. Moreover, (76.8%) of Persons with Albinism had never gone for an eye checkup. Poverty levels were highest among households that had more Persons with Albinism.

PWA experiencing sight challenge while reading. One of the beneficiaries with sunscreen

Proposed recommendations

  • ⦁ Seek support for further GPS profiling of PWA in other areas of the country
    ⦁ Create awareness about the challenges faced by PWA.
    ⦁ Legislators to draft laws and by-laws at the district level for protection of PWA.
    ⦁ Gov’t to give more protection to PWA
    ⦁ Collect data of PWA in schools by the Ministry of Education
    ⦁ MGLSD to specifically target PWA in their policy formulation and programs
    ⦁ Disseminate information on PWA to a wider audience


On the 21st May 2019, Albinism Umbrella with funding from VOICE launched the above report at Hotel Africana, Kampala. The report includes community perceptions about albinism and a database of Persons with Albinism and organizations serving these people in 10 selected districts of Eastern Uganda


Dr. Arthur Bagonza, a research consultant presented the research findings that highlighted the following;

  • ⦁ 67.7% of Persons with Albinism did not know the cause of albinism; 76% of PWA did not know what causes skin cancer and how to prevent it.
    ⦁ Mothers of children with albinism do not work while protecting their children from people in the community who wish to harm, hence poverty levels were highest among households that had more people with albinism
    ⦁ Access to and cost of sunscreen remains a major challenge to households of people with Albinism; only 11% can easily access sunscreen to protect their skin.
    ⦁ Most children with albinism are not in school because; low incomes and hence unable to pay for school requirements, poor eyesight, bullying at school, fear of losing their lives due to sacrifices, and limited access to sunscreen.


The launch was presided over by Mr. Bernard Mujuni, Commissioner Equity and Rights, in the Ministry of Gender Labor and Social Development who was representing the Minister of Gender, Labor, and Social Development. In his remarks, Mr. Mujuni affirmed that the study would be useful in determining where the ministry needs to take affirmative action to improve the welfare of persons with albinism.

The Commissioner Equity and Rights- Ministry of Gender Labor and Social Development

Similarly, Honorable Sofia Nalule who represents persons with albinism in parliament observed that the report will be fundamental and informative to the proposed bill on persons with albinism. The further noted that the purpose of having a separate bill is that people with disabilities and people with albinism face different challenges such as insecurity, the lack of access to the lifesaving sunscreen.

The Deputy Police Commissioner heading community policing also assured persons with albinism of his commitment to generate more awareness among the police officials to ensure the protection of persons with albinism in the country.

Recommendations

Health

  • ⦁ Intensify counseling and guidance for PWA to ease the stigma.
    ⦁ The government should make sunscreen an essential drug easily available in hospitals all over the country.
    ⦁ Create awareness of Skin Cancer among PWA especially in rural areas.
    ⦁ Educate people about albinism; cause, myths, and challenges.
    ⦁ Commissioner Onen Negris pledged to take up Albinism as a priority and endeavor to lobby for optical devices for PWA.


Education


  • .Advocate for an enabling environment for children with albinism at school
    ⦁ Awareness and sensitization to educate masses about Albinism so as to stop the stigma
    ⦁ Lobby for academic sponsorship opportunities for PWA willing to go to school at all levels.
    Security
    ⦁ Seek for Police’s active involvement in protecting PWA.
    ⦁ Since PWAs are more susceptible to kidnap for sacrifice and rituals, there is a need to develop a tracking profile of every individual using a GPS profile tracker for security as well as easy service delivery.
    ⦁ Afande Mulekerwa Anatoli pledged to partner with AU in all 133 districts of Uganda to protect PWA.
    ⦁ Create awareness about security among PWA and the general community especially so as to ensure safety.
    Employment and skills development
    ⦁ Skills training in small scale income generating activities so that PWA can be employed in the confines of their homes for protection from sun rays.
    ⦁ Capacity building to enhance the professional running of AU.
    ⦁ Lobbying for the employment of professional PWA in key government ministries and bodies as well as CSOs and other employers.
    ⦁ Gidong Peter pledged to handle PWA issues with more priority. He pledged to find out or inquire more about projects that PWA can engage in as part of the development programs of the GoU to tackle poverty.