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Introduction and background:
Globally, It is widely believed that 1 in 20,000 people globally are either Persons with Albinism (PWA) who carry the gene that is responsible for albinism. However, the methods used to arrive at this prevalence and consequently the prevalence reported remains very contentious. This has greatly jeopardised policy and planning for this ever increasing but yet vulnerable group of people.
In Africa, literature reports prevalence as high as 1 in 1,000 for countries like Zimbabwe. Overall estimates point at prevalence ranges between 1 in 5000 to 1 in 15,000 Persons with Albinism in Africa ADDIN EN.CITE Hong20062[4]2217Hong, Esther S.Zeeb, HajoRepacholi, Michael H.Albinism in Africa as a public health issueBMC Public HealthBMC Public Health212612006August 171471-2458journal articlehttps://doi.org/10.1186/1471-2458-6-21210.1186/1471-2458-6-212[ HYPERLINK \l "_ENREF_4" \o "Hong, 2006 #2" 4]. Weak government policies, poor community perceptions as well as the lack of proper documentation alluded to above have complicated programming and or even led to the death of this vulnerable group of people ADDIN EN.CITE ADDIN EN.CITE.DATA [ HYPERLINK \l "_ENREF_1" \o "Healey, 2014 #1" 1, HYPERLINK \l "_ENREF_5" \o "Brocco, 2015 #6" 5, HYPERLINK \l "_ENREF_6" \o "Lund, 2008 #5" 6]. This study seeks to bridge these gaps.
In Uganda, Persons with Albinism are included among persons with disability. However, there is no clear policy that directly addresses the plights of Persons with Albinism. According to Vision 2040, in order to enhance inclusive growth and development, one of the strategies in the second National Development Plan targets Persons with Disability (PWD) through equalization of opportunities, rehabilitation and inclusion of PWDs in their communities. Unfortunately, Persons with Albinism are not considered a priority in this policy.
Persons with Albinism ( PWA) continue to face numerous challenges that include but are not limited to descrimination, stigma and even death due to numerous myths and misconceptions surrounding their existence. Planning for this group of people has had tremendous challenges because of the uncertainity surrounding their numbers, policies in place meant to protect them as well as the few organisations helping them. This research attempts to bridge these gaps.
This study is premised on the numerous yet under reported challenges faced by Persons with Albinism in Uganda that have led to the death of about 50 Persons with Albinism in the last one year alone ADDIN EN.CITE Alex20187[7]7723AlexAlbino sacrifice in Uganda: Brains, bones, private parts missingThe Kampala SUN2018Kampala,Ugandahttps://kampalasun.co.ug/2018/01/27/albino-sacrifice-in-uganda-brains-bones-private-parts-missing/[ HYPERLINK \l "_ENREF_7" \o "Alex, 2018 #7" 7]. Whereas these challenges have been in existence for a long time, the Uganda Bureau of Statistics has never conducted a census to identify Persons with Albinism as a category of vulnerable people except in the Uganda Functional Difficulties Survey 2017.
The scanty available data on Albinism is one that has been compiled by different organizations working to support Persons with Albinism. Quite often, this data is incomplete and target specific based on the needs of the funding agency. The available data only highlights the number of Persons with Albinism seeking or receiving assistance from community based organizations and NGOs.
The main aim of the study is to create a data base through mapping all Persons with Albinism and organisations serving these people in 10 selected districts of Eastern Uganda. The study also determined perceptions of Persons with Albinism towards the communities they live in and the community perception towards them.
Methods:
This was a cross sectional study carried out in 10 Districts in Eastern Uganda focusing on Persons with Albinism. Spatial mapping was done using Tablets with GPS (Global Positioning System) capabilities. Household and organisational characteristics were captured using a digital structured questionnaire, using ODK (Open Data Kit)-Collect application. Perceptions of Persons with Albinism were gathered using indepth interviews and analysed based on the ecological model.
Findings:
The total population and distribution of Persons with Albinism per district is displayed in the table below. This distribution highlights the prevalence of Persons with Albinism across the 10 selected districts in Eastern Uganda.
Table1: Distribution of Persons with Albinism by District
DistrictN%Budaka145.3Bududa4717.9Butaleja114.2Buyende2710.3Kamuli2710.3Kumi62.3Manafwa4617.5Mayuge207.6Sironko5320.0Soroti124.6Total263100Sironko (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.
More than two thirds (67.7%) of the respondents did not know the cause of Albinism. Access to and cost of sunscreen remain major challenges to households of Persons with Albinism.
About (86.3%) of Persons with Albinism do not have access to sunscreen. In addition, (75.7%) of Persons with Albinism had eyesight problem. Moreover, (76.8%) of Persons with Albinism had never gone for an eye check up. The main reason for dropping out of school was lack of school fees.
Poverty levels were highest among households that had more Persons with Albinism. The richest households of Persons with Albinism (based on the Gramin Poverty Index) were found in Bududa (24%), Buyende (18.7%) and Manafwa (18.4%). On the contrary, the poorest households are in Sironko (27.8%), Bududa (22.2%) and Manafwa (16.7%). Organisations and secondary schools meant to help Persons with Albinism are not within the recommended 5km radius on average.
Perceptions of Persons with Albinism were analysed using the ecological model. The model was
used because it has been found to be a useful framework for understanding the range of factors that influence health and wellbeing from a public health perspective.
About albinos, we give birth to them but we are worried because they tell us that albinos have wealth; they want nails, the hair and everything that is on the body of an albino so I find that I am worried all the time, witch doctors need that child, people with spirits need the same child, that the hair costs millions so I find that I am scared/worried, protecting and looking after the child is not easy it is really hard time for me. This childs body is weak, this skin if there is nothing to smear on it dries up and looks bad and when the sun hits on the skin it really looks bad, develops wounds and if you are not the mother and God gave you such a child plus rumors from community members; those children are referred to as curses, bad luck, ekikulejje, my dear they refer to you as the one who gives birth to bikulejje children Mother of PWA, Buyende District.
In order to understand what level Persons with Albinism are served, the study investigated the distances from the homes of PWA to the different places or social service providers considered strategic to Persons with Albinism and the general community.
Table 3: Distance from home to social service providers or organizations
Distance (km)NMean (km)Distance to nearest primary school 2073.08Distance to nearest school 2045.93Distance to nearest health facility 2033.8Distance to nearest trading center 1981.41Distance to nearest police station2063.82Distance to nearest organization 1347.5
As indicated in the table above, Persons with Albinism travel on average almost 50km (47.5km) before they can get any form of help from organisations offering assistance to vulnerable people. The average distance to the nearest secondary school was (5.93km), health facilities (3.8km), primary schools (3.08km) and police stations (3.8km).
Conclusion
Persons with Albinism face a multitude of challenges that range from what affects the individual to what affects Persons with Albinism as a whole. Glaringly, fear and lack of self esteem remain the greatest challenges affecting the individual. The communities in which they live dont offer much beneficial assistance; the schools, police and churches and the mosques which should act as emotional cussions also dont play this cardinal role. The policy meant to protect Persons with Albinism is not explicit enough and seemingly offers more protection to people with disabilities in genaral terms and not necessarily PWA.
Recommendations:
The following recommendations were emphasized for different stakeholders on the way forward for Persons with Albinism in Uganda:
Providing protective clothing, glasses and caps for Persons with Albinism to protect them from harmful sun rays;
Ensuring availability of free or affordable skin creams and lotions. These should be put within easy access if they can not be distributed free on a more regular basis for PWA;
For sustainability purposes, suncreens should be developed locally so that they can be affordable and accessible to Persons with Albinism;
Building capacity of Persons with Albinism with income generating skills in order to increase household incomes. The income generating activities (IGAs) should be those that PWA can ably undertake indoors without exposure to the sun and excessive heat; and,
Demistifying the myths, superstitions and stereotypes about albinism. There should be total elimination of use of derogatory and disrespectful language towards PWA;
This profiling should be done to other regions of the country. The sample of 10 districts out of 120 is not enough to draw conclusively for all PWA in other parts pf the country.
Finally, there is need for increased sensitisation about PWA and better policy inclusion for Persons with Albinism at all levels (national, regional and community).
Albinism Umbrella Spatial Mapping and Profiling of Persons with Albinism in Eastern Uganda
Abridged Report Page PAGE 1 of NUMPAGES 5
Authors:
Dr. Betty Pacutho Udongo
Dr. Arthur Bagonza
Ms. Olive Namutebi
Albinism Umbrella
P.O Box 3262, Kampala
Tel: +256-393208405
Email:info@albinismumbrella.com
Districts in Eastern Uganda where the Spatial Mapping and Profiling of PWA was conducted
Figure 1: Socio-economic status of persons with albinism households
Figure 2: Individual and community perceptions of Persons with Albinism
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