Table 2.
Details of reviewed studies about albinism, according to location, sample, method design and significant outcomes
| Setting | Method | Results | Study quality | ||||||
|---|---|---|---|---|---|---|---|---|---|
| Ref. | Location | N | Design (strength) | Tools | Comparator(s) | IV(s) | DV(s) | 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 |
All study considered socio-demographic aspects (for example: age; gender; education lvl; socio-economic status; profession; etc.)
IV Independent variable; DV Dependent variable; CPM Colaizzi’s phenomenological approach; TCA Thematic content analysis; PWA People with albinism; HPS Hermansky-Pudlak syndrome; alb Albinism; lep leprosy; lvl level
A ↔ B: A is associated with B; A → B: A predicts B; A↑: A is higher/more important; A↓: A is lower/less important; with: w/; without: w/o; vs.: compared to…
Statistical significance index: p < 0.05*; p < 0.01**; p < 0.001***