Table 2 Storyline 1 – lived experiences of PWA and the SDOH

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%)

[6,7,8, 10,11,12, 29,30,31,32,33,34,35,36,37,38,39,40,41,42,43,44,45,46,47,48,49,50,51,52,53,54,55,56,57,58,59,60,61,62,63,64,65,66,67,68,69,70,71,72,73,74,75,76,77,78,79,80]

n = 58 (45%)

[3, 27, 81,82,83,84,85,86,87,88,89,90,91,92,93,94,95,96,97,98,99,100,101,102,103,104,105,106,107,108,109,110,111,112,113,114,115,116,117,118,119,120,121,122,123,124]

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%)

[5,6,7,8, 10, 11, 29, 30, 32, 33, 35,36,37, 39,40,41,42,43,44,45, 47,48,49,50, 53,54,55,56, 58,59,60,61,62, 64,65,66, 68,69,70,71, 73, 75, 77,78,79,80, 125,126,127,128,129,130,131,132,133,134,135,136,137,138,139,140,141,142,143,144,145,146,147,148,149,150,151,152]

n = 74 (57%)

[27, 81, 82, 84,85,86, 88,89,90,91,92,93,94,95, 97,98,99,100,101,102, 104,105,106,107, 110, 111, 114,115,116, 118,119,120,121,122,123,124, 153,154,155,156,157,158,159,160,161,162,163,164]

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%)

[1, 2, 5,6,7,8,9,10,11,12, 29,30,31,32, 35,36,37,38,39,40,41,42,43,44,45,46,47, 49, 51,52,53,54,55,56,57, 59,60,61,62,63,64,65,66,67,68,69,70,71,72,73,74, 76,77,78,79,80, 125,126,127,128, 130,131,132,133,134, 137,138,139,140,141,142,143,144, 146,147,148,149,150,151,152, 165,166,167,168,169,170,171,172,173,174,175,176,177,178,179,180,181,182,183,184,185]

n = 101 (78%)

[3, 27, 81,82,83,84,85,86,87,88,89,90,91,92, 94, 95, 97,98,99,100,101,102, 105,106,107,108,109,110,111,112,113,114,115,116, 118,119,120,121,122,123,124, 153,154,155,156,157,158,159, 161,162,163,164, 186,187,188,189,190,191,192,193,194,195,196,197,198,199,200,201,202,203,204,205,206,207]

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, 10,11,12, 31,32,33, 37,38,39, 42, 44, 47, 49, 51, 56, 60, 61, 63, 64, 67, 70, 74,75,76, 78,79,80, 126, 128, 134, 139, 145, 146, 149,150,151,152, 167, 171, 173, 174, 180,181,182,183, 185, 208, 209]

n = 53 (41%)

[3, 27, 81, 86, 89, 90, 92, 94, 95, 98, 99, 101, 106, 107, 111, 113, 115, 118,119,120, 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, 5,6,7, 10, 12, 30, 33, 36, 37, 41, 42, 44, 46, 47, 54, 60,61,62, 68,69,70, 73,74,75, 78,79,80, 125, 129, 130, 134, 150, 152, 167, 171, 184]

n = 38 (29%)

[3, 27, 82, 87, 89,90,91, 94, 95, 97,98,99, 101, 102, 104, 106, 111, 112, 114,115,116, 118,119,120,121,122, 124, 155, 160, 163, 164, 188, 193, 194, 206]

n = 35 (41%)

 Gender Equality

n = 17 (8%)

[10, 36, 43, 44, 51, 69, 79, 80, 148, 177]

n = 10 (8%)

[96, 103, 114, 124, 162, 163, 210]

n = 7 (8%)