Background
Background and literature review
Methods
Phase I: meta-narrative review
Planning phase
Searching phase
Mapping phase
Appraising phase
Synthesis phase
Recommending phase
Phase II: priority-setting survey
Order of Priority | Top Two High Scores | Scores | Bottom Two Low Scores | Scores |
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Advocacy strategies | ||||
Cluster #1: Local Advocacy Strategies | Improve skin care | 97.4 15a | Use literature 26 | 43.6 |
Access to education | 94.9 11 | Use theatre (plays) 24 | 42.1 | |
Cluster #2: International advocacy Strategies | Strategies originating from international NGOs 1 | 94.8 | Financial assistance from international community 4 | 82.1 |
Cooperation to prevent cross-border crimes 6 | 92.3 | Lobby for openness to PWA seeking asylum 5 | 53.9 | |
Cluster #3: Avenues of Influence | Primary teachers in schools 42 | 89.5 | Seek alliances with supportive politicians 34 | 74.4 |
Make central albinism support groups 36 | 87.2 | Witchdoctors and traditional healers 37 | 66.7 | |
Cluster #4: Intersectoral Advocacy Strategiesb | Strategic alliances among NGOs 8 | 94.9 | Alleviate poverty 9 | 64.1 |
Promote Albinism Awareness Day 10 | 69.2 | |||
Policy initiatives | ||||
Cluster #1: Health and Social Policy | Free eye and skin care 46 | 92.3 | Poverty reduction 52 | 74.4 |
Integrated classrooms 50 | 92.3 | Policy specific to older PWA 53 | 53.8 | |
Cluster #2: Policing | Strengthen local policing 73 | 89.2 | Sting operations to intercept trafficking 74 | 76.3 |
Special prosecution task force 72 | 78.9 | Pursue justice in internation courts 71 | 46.5 | |
Cluster #3: Legislation and Regulation | Child protection policies 65 | 84.6 | Ban TV and radio programs that stereotype 69 | 59.0 |
Regulation of witchcraft practitioners 67 | 82.1 | Regulate Nollywood 70 | 56.4 | |
Cluster #4: Professional Groups | Create National Office for Albinism 54 | 87.2 | Create Local Officer for Albinism 55 | 59.0 |
Increase number of teaching assistants 57 | 76.9 | Increase number of vision specialist teachers 58 | 56.4 | |
Research priorities | ||||
Cluster #1: Stigma, myths, beliefs | How to end discrimination 81 | 88.9 | Experience of older PWA 79 | 50.0 |
Ways to dismantle public health myths 82 | 86.1 | Death myth 80 | 44.4 | |
Cluster #2: Research about Advocacy | Effectiveness of albinism advocacy strategies 149 | 88.6 | Social dynamics with and within the disability movement 154 | 62.9 |
How to integrate voices of PWA 153 | 85.3 | Human rights - comparing albinism with other disabilities 151 | 57.1 | |
Cluster #3: Witchcraft | Best ways to engage witchdoctors 134 | 85.3 | How economies of religion relate to killings 128 | 60.0 |
Impact of witchcraft on PWA 124 | 80.0 | Human sacrifice of PWA 123 | 58.8 | |
Cluster #4: Psychological Wellbeing | Resilience 85 | 83.3 | Impact of trauma 86 | 75.0 |
Social change in Africa 88 | 75.0 | Trauma-informed care and policy 87 | 75.0 | |
Cluster #5: Economic and Social Rights | Educating employers 116 | 83.3 | Variability of service 111 | 52.8 |
Accommodations in the workplace 115 | 72.2 | Effect of agrarian to global market economies 109 | 40.0 | |
Cluster #6: Health and Social Care | Improve providers’ knowledge & practices 98 | 82.9 | Genetic testing 91 | 44.4 |
Local specialist low-vision care 94 | 72.2 | Cultural views of wearing glasses 95 | 33.3 | |
Cluster #7: Family | How to support families 106 | 83.3 | Families’ knowledge of genetics 104 | 58.3 |
Lives of children with albinism 103 | 67.6 | Families and safety | 58.3 | |
going to school 105 | ||||
Cluster #8: Law | Human trafficking139 | 74.3 | Applicability of international criminal law 137 | 60.0 |
Effectiveness of safehouses 142 | 74.3 | Legislation needed to grant asylum 140 | 45.7 | |
Cluster #9: Religion and Church | How to engage faith leaders 120 | 69.4 | African ontologies 118 | 69.4 |
Role of faith communities 119 | 63.9 | Everyday religion in Africa 117 | 54.3 | |
Cluster #10: Media and Communicationb | Impact of media on stereotypes 146 | 65.7 | Media bias in Europe and U.S. 145 | 45.7 |
Role of Nollywood films 147 | 45.7 |
Phase III: roundtable
Results: diffracting and weaving storylines
Storyline 1: the lived experience of albinism and the social determinants of health in need of human rights protection
Domain | Academic Literature References (n = 130) | Grey Literature References (n = 86) |
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Proximal | ||
Visual impairment; risk for skin damage/cancer. May limit outdoor activities due to (i) not having protective clothing and eyewear, and (ii) because of fear of violence n = 104 (48%) | n = 58 (45%) | n = 46 (53%) |
Access to Education: Schooling and learning are impacted by (i) visual impairment, (ii) access to quality education with accommodations, (iii) bullying, and (iv) separation from family (if in boarding schools) n = 122 (56%) | [5‐8, 10, 11, 29, 30, 32, 33, 35‐37, 39‐45, 47‐50, 53‐56, 58‐62, 64‐66, 68‐71, 73, 75, 77‐80, 125‐152] n = 74 (57%) | n = 48 (56%) |
Community-level Social Inclusion/Exclusion: (i) lack of knowledge about albinism, (ii) stigma and discrimination, (iii) abandonment; (iv) emotional and physical abuse. Service providers, community members, employers n = 176 (81%) | n = 101 (78%) | n = 74 (86%) |
Distal | ||
Place and Geography: (i) prevalence of albinism, (ii) amount of sun exposure, (iii) explanatory systems at play (i.e., African ontology), (iv) location of attacks, (v) regulation of traditional healers, (vi) rural/remote/low resource areas with limited access to services and policing/ security, and (vii) other SDOH n = 90 (42%) | [1, 2, 5, 7, 8, 10‐12, 31‐33, 37‐39, 42, 44, 47, 49, 51, 56, 60, 61, 63, 64, 67, 70, 74‐76, 78‐80, 126, 128, 134, 139, 145, 146, 149‐152, 167, 171, 173, 174, 180‐183, 185, 208, 209] n = 53 (41%) | [3, 27, 81, 86, 89, 90, 92, 94, 95, 98, 99, 101, 106, 107, 111, 113, 115, 118‐120, 122, 124, 153, 157, 159, 160, 164, 187, 190, 193, 194, 197, 198, 201, 202, 204, 206] n = 37 (43%) |
Poverty and Employment: (i) access to income, (ii) subsistence living, (iii) employment conditions can involve damaging sun exposure and lack of knowledge about albinism, and (iv) access to transportation n = 73 (34%) | [1, 2, 5‐7, 10, 12, 30, 33, 36, 37, 41, 42, 44, 46, 47, 54, 60‐62, 68‐70, 73‐75, 78‐80, 125, 129, 130, 134, 150, 152, 167, 171, 184] n = 38 (29%) | [3, 27, 82, 87, 89‐91, 94, 95, 97‐99, 101, 102, 104, 106, 111, 112, 114‐116, 118‐122, 124, 155, 160, 163, 164, 188, 193, 194, 206] n = 35 (41%) |
Gender Equality n = 17 (8%) | n = 10 (8%) | n = 7 (8%) |
I. Proximal social determinants of health (SDOH)
II. Distal social determinants of health (SDOH)
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◦ In relation to the prevalence of albinism. The rates of albinism vary worldwide. In North America and Europe, 1 in every 17,000 to 20,000 people has some form of albinism, and this rate increases in sub-Saharan Africa (as high as 1 in 1000 for selected populations), parts of the Pacific (1 in 700), and among some Indigenous peoples in North and South America (1 in 70 to 1 in 125) [3]. As noted by the UN Independent Expert on Albinism, “an important caveat is that some studies of the frequency of albinism often lack objectivity in their methodology or are incomplete, rendering estimates as best guesses in most instance” (p. 5) [3].
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◦ In relation to the amount of sun exposure. With the predominance of literature on albinism relating to Africa, the concern about sun exposure in tropical climates is frequently mentioned [47, 128, 146] with daily patterns adapted by, for instance, avoiding the outdoors midday. Yet, in places where concern for safety is a constant presence, travelling in the dark brings other risks and worries [92]. Education, as an interrelated SDOH, comes into play when PWA are unaware of their risk for skin cancer and other skin-related conditions. Amnesty International reports that in Malawi, most adult people with albinism they interviewed only received information about albinism and preventing skin cancer much later in life when they have already been affected by the harsh African sun [92]. Employment, likewise, relates to place and sun exposure, in places where the main economic activities are subsistence farming and trading at the markets [90]. Limited employment opportunities and vocational training condemn many PWA to outdoor income-generating activities under extended sun exposure [101].
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◦ In relation to the explanatory systems at play (i.e., African ontology). On a broader level, place is related to the explanatory systems that may be at play in relation to causal forces – that cause and are caused by albinism [3, 12]. The literature commonly locates myths and superstitions as characteristic of rural areas where people tend to have less education, and where traditional healers are readily accessed [31, 180]. We take up the matter of explanatory systems in detail in Storyline #2.
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◦ In relation to security and protection. Place—whether rurality or jurisdiction—is also a distal determinant of access to legal services and policing. In Tanzania, the local governance system of street leaders has managed to avert many attacks on the one hand [80], but the state has been criticized for not fully implementing its obligations as a UN member state to prosecute those involved in attacks [61]. The grey literature has been more likely to address security and protection, as to the location of attacks, although the academic has increasing brought attention to these concerns, as well as a call to improve record keeping. Mostert [181], drawing on statistics from Under the Same Sun, reports that trafficking of the body parts of PWA have occurred at relatively high levels in Tanzania, Burundi, Kenya, the Democratic Republic of the Congo, Mozambique, Malawi, South Africa, and Swaziland. Isolated reports of killings and attacks have also been documented in Benin, Botswana, Burkina Faso, Cameroon, Egypt, Ghana, Guinea, Ivory Coast, Lesotho, Mali, Namibia, Niger, Nigeria, Rwanda, and Senegal.”
Storyline 2 – threats to the security and well-being of PWA through a human rights lens
Academic Literature References (n = 130) | Grey Literature References (n = 86) | |
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International Instruments | ||
Universal Declaration of Human Rights n = 41 (19%) | n = 23 (18%) | n = 18 (21%) |
Convention of the Rights with Persons with Disabilities n = 47 (22%) | n = 21 (16%) | [81, 83, 84, 89, 91, 92, 94, 95, 98, 101‐103, 106, 108, 109, 113‐116, 122, 153, 157, 202, 204, 215, 216] n = 26 (30%) |
Convention on the Elimination of All Forms of Racial Discrimination n = 24 (11%) | n = 8 (6%) | n = 16 (19%) |
Convention on Elimination of Discrimination against Women n = 20 (9%) | n = 7 (5%) | n = 13 (15%) |
Convention on the Rights of the Child n = 27 (13%) | n = 8 (6%) | n = 19 (22%) |
Convention against Torture and other Cruel, Inhuman or Degrading Treatment or Punishment n = 13 (6%) | n = 4 (3%) | n = 9 (10%) |
Convention on Civil and Political Rights n = 28 (13%) | n = 11 (8%) | n = 17 (20%) |
Convention on Economic, Social and Cultural Rights n = 21 (10%) | n = 8 (6%) | n = 13 (15%) |
Convention for the Protection of All Persons from Enforced Disappearance n = 1 (0%) | n = 0 (0%) | [202] n = 1 (1%) |
Convention relating to the Status of Refuges n = 3 (1%) | [183] n = 1 (1%) | n = 2 (2%) |
Convention against Transnational Organized Crime n = 2 (1%) | n = 0 (0%) | n = 2 (2%) |
UN Declaration on the Rights of Persons Belonging to National or Ethnic, Religious and Linguistic Minorities n = 1 (0%) | [79] n = 1 (1%) | n = 0 (0%) |
African Instruments | ||
African Charter of Human and Peoples’ Rights n = 33 (15%) | n = 17 (13%) | n = 16 (19%) |
African Charter on the Rights and Welfare of the Child n = 15 (7%) | n = 8 (6%) | n = 7 (8%) |
African Charter on Human and Peoples’ Rights on the Rights of Women n = 5 (2%) | n = 2 (1%) | n = 4 (5%) |
African Charter on Human and Peoples’ Rights on the Rights of Persons with Disabilities n = 2 (1%) | [59] n = 1 (1%) | n = 2 (2%) |
Regional Action Plan n = 20 (9%) | n = 3 (2%) | n = 17 (20%) |
I. Nature of human rights violations (trauma & violence)
II. Priorities vary according to perceived underlying impetuses (causes) of human rights violations
Cause (n = 216) | Academic Literature References (n = 130) | Grey Literature References (n = 86) | Survey Items (priorities) (n = 155) |
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SDOH n = 151 (70%) | n = 85 (65%) | n = 66 (77%) | [9, 11‐17, 41‐43, 45‐48, 50‐53, 57‐61, 75, 76, 79, 84‐87, 89‐95, 99, 99, 101‐103, 105, 106, 110‐116, 143, 153] n = 54 (35%) |
Ignorance about albinism n = 114 (53%) | [5, 6, 8, 11, 12, 31‐33, 35‐37, 39‐41, 43‐45, 47, 49, 53, 55, 56, 58‐62, 64, 66, 67, 69, 73, 74, 77, 78, 125‐130, 134, 137‐139, 151, 152, 169‐172, 174, 178, 181, 185, 218] n = 56 (43%) | [3, 27, 81‐95, 97‐99, 101, 102, 104‐110, 114, 116, 118‐122, 124, 153, 155‐158, 162, 187‐189, 191‐196, 199, 201‐203, 205, 216] n = 58 (67%) | n = 26 (17%) |
Weak Government n = 69 (32%) | [10, 36, 42‐44, 46‐51, 56, 60, 61, 66, 67, 73, 74, 76, 78‐80, 129, 131, 135, 138, 149‐152, 169, 170, 183, 184] n = 34 (26%) | [3, 81, 82, 85, 86, 89, 90, 92, 93, 95, 98, 99, 101, 104, 106‐111, 114‐116, 120‐124, 153, 161, 193, 199, 202, 216, 217] n = 35 (41%) | n = 44 (28%) |
Globalization n = 8 (4%) | n = 6 (5%) | n = 2 (2%) | n = 6 (4%) |
Witchcraft n = 77 (36%) | [1, 2, 11, 12, 31, 33, 36, 37, 39, 42‐44, 47, 49, 51, 56, 61, 66‐70, 73, 77‐80, 128, 129, 131, 136, 139, 141, 146, 148, 167, 169, 171, 173, 174, 180, 183, 209] n = 43 (33%) | [3, 27, 89, 90, 96, 98, 99, 101, 104‐111, 115, 118‐123, 156, 157, 160, 190, 192, 193, 197, 198, 202, 204, 217] n = 34 (40%) | n = 18 (12%) |
African Ontology n = 29 (13%) | n = 22 (17%) | n = 7 (8%) | n = 5 (3%) |
Causal narratives | Corresponding priorities |
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Social determinants of health (70%) | • Improved access to health/social services • Better education and employment • Poverty mitigation |
Ignorance about albinism (53%) | • Public education • Genetic counselling |
Witchcraft (36%) | |
Weak governance (32%) | • Advocacy • Civil society organizations fill the service gaps |
Globalization (4%) | • Global regulation • International legal frameworks |
Witchcraft (36%) | • Law enforcement, collect data re: attacks • Regulation of witchdoctors |
African ontology (13%) | • Teaching about the nature of being human • Engaging moral and religious leaders |