Table 2 Details of reviewed studies about albinism, according to location, sample, method design and significant outcomes

Anshelevich et al. [37]

Botswana

27

Exploratory -qualitative (low)

Semi-structured interviews (TCA)

N/A

N/A

N/A

Educational environments: health-related barriers to learning; emotional barriers; discriminatory barriers; limited resources vs. positive changes

Health care access challenge: availability, accessibility, affordability, adequacy & acceptability

Psychosocial impact of stigma & discrimination: social interaction challenges; employment challenges; psychological impacts on emotions & self-concept

Myths & superstitions: humanity & soul concerns; contagion of albinism; good & bad luck superstitions

High

Aborisade [41]

Nigeria

62

Exploratory -qualitative (low)

Semi-structured interviews (TCA)

N/A

N/A

N/A

Perceived prejudice from family in childhood; disability-specific physical violence; violence severity & impact on family relationship; coping strategies (spiritual consolation/grace of god; taking drugs; confiding in friends; mirror-talking; humor; withdrawal from others/avoidance)

High

Tambala-Kaliati et al. [32]

Malawi

27

Exploratory -qualitative (low)

In-depth semi-structured interviews; focus group (n = 2) (IPA)

N/A

N/A

N/A

Barriers to education; lack of knowledge about alb; superstitions & beliefs (alb come from mothers; alb as a family/mother curse; supernatural being); economic restraints; stigma & discrimination (humiliation; excluding society; death threats); health care challenges; personal/emotional issues; family issue (abandoned mothers; frightened families; isolating families)

High

Chu et al. [43]

Botswana

50

Cross-sectional—quantitative

(moderate)

Questionnaires (OGs)

99 non-affected subjects

Presence of albinism

Health status, practices & care-access; self-perceptions; beliefs & attitude about alb

PWA: excellent understanding of the disease (90%) vs. non-PWA (63%)

Most PWA felt accepted by friends (88%) and family (94%)

PWA: feeling of acceptance by their community↓*; discrimination↑*; impacted by stigma in their social interactions↑ vs. non-affected subjects

Almost all PWA believe they deserved extra financial and social support (95%); ½ believe albinism should be considered as a disability

Moderate

Huang et al. [42]

Taïwan

10 ♀

Exploratory -qualitative (low)

In-depth semi-structured interviews (CPM)

N/A

N/A

N/A

Discrimination; normality aspirations; sexual & maternal aspects

High

Affram et al. [44]

Ghana

105

Cross-sectional—quantitative (low)

Questionnaires (PWI-A; ISDL-SS; MSPSS)

N/A

Perceived Social support (PSS); Social stigma (SS)

Subjective well-being (SWB)

Perceived social support mediates the effect of social stigma on subjective well-being:

• SS↑ indirectly → SWB↓***;

• SS↑ directly → PSS from friends↓** and significant others↓**;

• PSS from significant others↑ → SWB↑*

Moderate

Dapi et al. [38]

Cameroun

19

Exploratory –qualitative (low)

Focus groups (n = 3) (TCA)

N/A

N/A

N/A

Discrimination; stigma; injustice; rejection; superstition; associated skin diseases (lack of care & limited resources); knowledge toward alb +  + 

High

Estrada-Hernandez [31]

Puerto-Rico

8

Exploratory –qualitative (low)

Semi-structured interviews (TCA)

N/A

N/A

N/A

Knowledge about alb +  + ; inappropriate social attitudes; alb boost resiliency; importance of social support; main challenges = visual impairment, sun adapt, lack of independence; need more medical awareness (HPS + +)

Moderate

Ojedokun et al. [34]

Nigeria

75

Cross-sectional—quantitative (low)

Questionnaires (ESPHWPLWA)

N/A

Social stigma (SS)

Psychological, social and health related well-being

[Results interpretation irregularities]

SS negatively ↔ social well-being* and health well-being* (no information if these are positive/negative correlations)

Low

Christensen et al. [39]

Puerto-Rico

23

Exploratory -qualitative (low)

In-depth semi-structured interviews (CPM)

N/A

N/A

N/A

Wandering diagnosis; lack of medical consideration; lack of knowledge (uncertain future); coping = research on HPS, family support, spirituality; burden of being an expert (lead care coordination); HPS community support +  + 

High

Attama et al. [45]

Nigeria

100

Cross-sectional—quantitative (moderate)

Questionnaire (GHQ-28); structured interview (MINI)

100 Leprosy (lep) patients

Socio-demographic; Disease type (Leprosy vs. Albinism)

Psychiatric morbidity; psychiatric diagnosis

Psychiatric morbidity↑ for: ♂ lep vs. ♂ alb*; married lep vs. married alb*; no or low education lvl lep vs. idem alb***; sales/services & agricultural lep vs. idem alb***; self-employed lep vs. self-employed alb***

Psychiatric morbidity↑ for unmarried alb vs. unmarried lep***

High

Maia et al. [35]

Brazil

38

Cross-sectional—quantitative (moderate)

Questionnaires (WHOQOL-BREF)

40 non-affected subjects

Presence of albinism

Quality of Life (QoL)

PWA physical QoL is lower than control physical QoL***

Moderate

Phatoli et al. [33]

South Africa

5

Exploratory -qualitative (low)

Semi-structured interviews (TCA)

10 non-affected subjects

N/A

N/A

Myths & stereotypes about alb; discrimination; alb social avoidance

Moderate

Ajose et al. [36]

Nigeria

87

Cross-sectional—quantitative (moderate)

Dermatologist's clinical assessment & Questionnaire (HADS)

102 vitiligo patients

Health informations; Disease type (Albinism vs. Vitiligo)

Anxiety; Depression

Anxiety & depression↑ for: PWA with skin complications vs. without***; PWA without skin complication vs. vitiligo patients**; > 50 years old PWA vs. > 50 years old vitiligo patients**

Anxiety↑ for ♀ PWA vs. ♀ vitiligo patients**

Depression↓ for married PWA vs. married vitiligo patients*

High

Pooe-Monyemore et al. [40]

South Africa

15

Exploratory -qualitative (low)

In-depth semi-structured interviews (CPM)

N/A

N/A

N/A

Importance of self-concept; family role in self-concept; stigma due to appearance, myths & superstitions; role of government, non-governmental organizations, private sectors & media in development of alb recognition

High

Ezeilo [111]

Nigeria

3

Exploratory -qualitative (low)

Essay writing

N/A

N/A

N/A

Albinism as a demerit: main theme = conspicuous color, sensitive skin, visual impairments, interpersonal problems (romantic) & society's unkind attitude

Low