Problems and Purpose

Persons with albinism in Uganda [1], and elsewhere in Africa, face a lot of stigma and discrimination due to differences in their skin colour and their short-sightedness. In Sub Saharan Africa, albinism is associated with many negative superstitions and beliefs that pose extreme danger to individuals who have the condition. Persons with albinism are at risk of being kidnapped, murdered, and/or having their body parts used for ritual sacrifices. Many are rejected at birth by their own parents, which poses a great risk for them in society, including isolation and exclusion. This problem is exacerbated by the fact that little is known about albinism at the community and policy levels in relation to their demographics.

The profiling of persons with albinism described in this case was the first of its kind in Uganda, and aimed at creating credible data as a basis for advocacy and enhanced service delivery in the four major regions of the Uganda (Central, Western, Eastern, and Northern). The objectives of this initiative, which took place between 2018 and 2020, were:

●     to increase acceptance, recognition, and protection of persons with albinism at family and community levels;

●     to increase access to quality education for persons with albinism at all levels of education; and,

●     to improve health conditions of Persons with albinism, mainly focusing on skin protection.

Persons with albinism, who are often stigmatised and discriminated against by Ugandan society, needed to be at the forefront of this innovation. Their participation was a demonstration of their existence, their capacity, and the need for PWAs to be meaningfully included in service delivery.

Background History and Context

In Sub-Saharan Africa, anecdotal evidence shows that the prevalence of albinism is between 1:5000 to 1:15,000 individuals (Marçon & Maia, 2019). The stigma and discrimination PWAs face are the major bottlenecks to their full participation of in development processes and contribute to their exclusion from social services. In most communities in the region, this discrimination adversely affects the socio-economic opportunities of PWAs in business, education, and employment. These attitudes result in self-isolation and self-stigma, to the extent that PWAs lack confidence to seek relevant information and knowledge regarding their wellbeing.

In this context, using a community participation approach to undertake the baseline survey was the most appropriate method. This approach enabled the active involvement of PWAs in understanding their situation through first-hand data collection.

Organizing, Supporting, and Funding Entities

Albinism Umbrella (AU), a Uganda-based non-government organisation (NGO) was only one year old when it began pursuing this opportunity. Passionate and convinced of the need for this work, AU sought a fiscal sponsor. Oxfam Uganda, under the Voice project, identified the need to have evidence-based advocacy for PWAs as the submitted proposal, as Voice had grant category where albinism was a perfect match. The fiscal sponsor, however, did not meet the threshold as set by Voice standards and AU was given special entry on a trial basis.

The proposal had been technically approved with objectives and methodology already laid out. Albinism Umbrella then sought the services of an independent public health specialist, as a consultant to spearhead the research as the Principal Investigator, with support from a Co-Investigator, as well as Makerere University’s Public Health Department. The Principal investigator was part of Pincer Consulting group.AU staff were all involved and research assistants were recruited, as per research protocols. Importantly, it was necessary to have PWAs as research assistants to manage the stigma and associated challenges related to a potential fear of releasing information or even data being concealed.

Participant Recruitment and Selection

First and foremost, the selection of the districts was biased by media reports that profiled the work of a community-based organisation depicting a higher number of Persons with albinism in the region compared to the rest of the country. Albinism Umbrella wanted to verify this with scientific research and delve deeper into the matter. Within the Eastern region selected, Albinism Umbrella then descended to the main sub-regions and randomly selected 10 districts, as per the available resources for the pilot research. The pilot districts are: Soroti, Kumi, Sironko, Budduda, Manafwa, Budaka, Butaleja, Kamuli, Buyende, Mayuge. Participants were purposely selected as households with any person with albinism. 

The region, sub-region, and districts were selected by secret ballots. Stakeholders were then listed and, in consultation with government departments and agencies, a list of representatives was generated. The District Heads of health, education and security were specifically targeted because these are the major services required by Persons with albinism, and they are the knowledge experts in their area of jurisdiction. Local opinion leaders, and particularly cultural and religious leaders, were also identified from the local networks to support the research. The leaders provided a unique perspective in understanding the belief systems around albinism.

Persons with albinism were selected as Research Assistants based on criteria including basic education, language proficiency, and openness to learning. These individuals played a guiding role for the technical team and their work was crucial to the project’s success. The research respondents were identified through the snowball method, whereby AU relied on community outreach to identify them. The technical team, led by the Principal Investigator also went through interviews to be selected. The criteria used were education level, location, and local dialect command. These were given a stipend and facilitated logistically to carry out their work.

Methods and Tools Used

The research used both qualitative and quantitative methods, as appropriate. Quantitative methods were used for the numeric attributes of the research while the qualitative was employed to seek insight into perceptions. The tools used were questionnaires, key informant interviews, in-depth interviews, and focus group discussions. The Principal Investigator used these methods and tools because the task at hand required a triangulation of different aspects. For instance, a District Health Officer would have a key informant interview and provide necessary information about the health system and its operation for the different categories of citizens, whereas the in-depth interviews with the rights holders gave the actual and lived experience.

The quantitative tool was loaded onto a tablet/ phone for easy of administering while the interviews were recorded and later transcribed and processed. This method was preferred to traditional paper-based systems for ease of data capture. It was also used to mitigate the risk of loss as the terrain and weather pattern of the areas of the research were quite unfavourable for the work. (Preliminary local network information revealed that PWA tend to live quite far from the main areas of habitation, which was an assertion this research sought to verify).

What Went On: Process, Interaction, and Participation

The methods used were first discussed with a small group, who would then train others. The Principal Investigator, Co-investigator, and AU staff, formulated of the questionnaire, which was drafted and used as a pre-test with a small cluster before a full roll out in the field. The feedback given in this participatory engagement was used to improve the tool before the actual data collection. This was mainly done for the quantitative tool, which was more biased towards numbers.

The qualitative key informant interviews and in-depth interviews were developed with the support of researchers from Makerere University’s Public Health Department, who had experience in undertaking such studies. The tools were then subject to the scrutiny of the research ethics committee for completeness as per the standards.

The issues that were mainly under this research were demographic in nature. The World Bank household survey questionnaire guided the quantitative aspect of the research. The participant’s opinions or knowledge about the various aspects was collected during the interactions. The techniques used facilitated dialogue as focus group discussion captured all voices. The groups were purposely selected to remove bias or non-participation, for instance, women and men from the community were separated from persons with albinism as well as district leaders. This would make it possible for participants to easily voice out their ideas without interference or dominance of males over women or vice versa.

The quality of work was deemed good and sufficient as the number of focus group discussions reached saturation, ensuring all views were captured the data would provide the best output.

The process was designed to provide credible information that can be relied upon and used as a baseline. The consensus was unanimously arrived at as the different methods used pointed to the same issues. The coding and analysis of the qualitative data proved this well. There was overwhelming evidence of lack of knowledge about albinism from all the stakeholders The PWAs themselves proved ignorant about the cause of their own difference.

The process of decision-making was evenly embedded in the questionnaire. Participants would be asked to provide solutions or give recommendations of what needed to be done. The other aspect was for the Government officials who were to provide these services to the citizens, admitted their lack of information to act accordingly. They too pledged to use the information to provide required services to the community.

The research results were disseminated to a wider audience, a process whereby Albinism Umbrella sought to engage most Government representatives. There was evidence on radio programs, health centres, and schools of those who participated sharing the knowledge about albinism. This further culminated into the Ministry of Gender, Labour and Social Development taking up the celebration of the International Albinism Awareness Day (June 13^th) as one of its annual activities.

The recommendations were communicated to the public during a report validation and launch meeting. The findings were broadcasted using different media houses and channels. The information dissemination received overwhelming appreciation and the desire to spread it across the region.

Influence, Outcomes, and Effects

    The active participation of persons with albinism in implementing the survey had a positive influence on respondents. First, it helped bridge the gap between the (unknown) research assistant and the respondent, when interacting with a person with a similar skin colour to their own. This facilitated a natural bond and ease in collecting information.

The intended outcome of influencing attitudes and social acceptance was achieved and different stakeholders pledged their support to provide services to the albinism community. The participation of PWAs in the research made a huge difference, as some of them demonstrated their leadership capacities while stigma was reduced for others. The initiative has been – and continues to be – a benchmark for the delivery of social services for PWAs. For instance, learners with albinism are now given special attention during national examinations across the country.

Local and international NGOs and development partners have developed a keener interest in supporting this marginalised group, leading to more direct interventions. For instance, the Office of the High Commissioner for Human rights (OHCHR) has supported the International Albinism Awareness Day (IAAD) From June 2015 to June 2022 in Uganda, until its exit. It is also evident now that the social fabric is slowly changing towards a greater level of acceptance than before. Families can ably walk with their children with albinism, which was not the case before. Others who were on the verge of separation because of such children have been counselled to love and care for their children as both parents.

There are NGOs currently who are opening space for persons with albinism. We have seen bodies like UNICEF and UN Human Rights advocate and include albinism in their programming as a result of this initiative in the country.

Analysis and Lessons Learned

    Selecting research assistants who were from the same area and who knew the local language worked really well to contribute to the study’s success. Further, the participation of persons with albinism to support their work was another success factor for this survey, allowing a deeper level of trust and relationship building with key respondents. The process of obtaining clearance from district officials, and including their participation as respondents, positively contributed to the data triangulation of the survey.

The challenges faced included weather disruptions, faith-based respondents refusing to participate in the survey, and insufficient resources to cover a wider area. These were overcome by rescheduling where weather was not favourable, and respecting the process of seeking consent to ensure research assistants could proceed, as well as working within the approved budget to cover the relevant locations.

Overall the initiative was assessed as successful. As one respondent from R23 Mayuge district  exclaimed: “We have never seen any NGO or government body come to us. This is really exciting and hope you come back to check on us. We are so grateful.” Participant expectations were met, and sometimes exceeded as participants with albinism were given sunscreen – a great relief to many, as many PWAs had never seen or used sunscreen.

The digital method of data collection proved very effective way for this research, providing better storage, analysis over time, and sharing with the relevant stakeholders. The use of subject matter experts alongside persons with a lived experience for an issue that concerns them is a vital method to distil the right information and achieve meaningful impact.

Finally, one of the most important lessons evidenced from this initiative is around the power of connection, participation, and sharing. The process revealed that given an opportunity, inexperienced community members can contribute a tremendous amount to knowledge mobilization and empowerment within their own community. With many leaders gaining knowledge about albinism, and becoming aware of how to support PWAs in their area, the phrase “knowledge is power” applies well to this exercise. Indeed, this case shows the power of rights holder participation and the change it can create in the short term, as well as the ripple effects in the delivery of social services.

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