Oculocutaneous albinism: an African perspective

McBride, Geraldine

doi:10.22599/bioj.78

Cited by 7 publications

(7 citation statements)

References 14 publications

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“…Research has shown that OCA is the most common form of albinism in many parts of Africa (Cruz-Inigo, Ladizinski, & Sethi, 2011;Kromberg et al, 2012). The incidence and prevalence of albinism in Africa varies between and within countries, and there are variations in the treatment of PWA in Africa (Mcbride, 2014), with various studies reporting on violence against and attacks on PWA in some African countries (Cruz-Inigo et al, 2011;Franklin, Lund, Bradbury-Jones, & Taylor, 2018;Ikuomola, 2015). For example, Baker, Lund, Nyathi, and Taylor (2010) described instances where PWA in South Africa and Zimbabwe were killed or left to die by their families because of the social stigma associated with their condition.…”

Section: Introductionmentioning

confidence: 99%

Influence of social stigma on subjective well‐being of persons with albinism in Ghana

Affram

Teye‐Kwadjo

Gyasi-Gyamerah

2019

Community & Applied Soc Psy

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Previous studies have shown that social stigma adversely affects quality of life. However, little research has assessed the influence of social stigma on subjective well‐being (SWB) of persons with albinism (PWA) in Ghana, and the role that perceived social support plays in this relationship. This study investigated the SWB of PWA in Ghana. Participants (N = 105) completed a survey questionnaire on social stigma, social support, and SWB. Results from structural equation modelling showed a significant negative association between social stigma and SWB. Perceived social support partially mediated the negative effect that social stigma has on SWB, with significant other support emerging as a reliable predictor of SWB in this sample. Results suggest that the population with albinism in Ghana is experiencing high levels of social stigma, which is adversely affecting its SWB. Social stigma seems to be preventing PWA from being accorded the needed social support by family and friends. The results highlight the importance of designing stigma‐reduction educational interventions that target social stigma at family, community, and societal levels.

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Section: Introductionmentioning

confidence: 99%

Influence of social stigma on subjective well‐being of persons with albinism in Ghana

Affram

Teye‐Kwadjo

Gyasi-Gyamerah

2019

Community & Applied Soc Psy

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“…Morbidity and mortality linked to skin cancers, discrimination, stigmatization, and school dropouts due to vision problems are still high with a scarcity of preventative and curative measures. (McBride, 2014).…”

Section: Historical Backgroundmentioning

confidence: 99%

Health-related quality of life and factors associated with depression among people with oculocutaneous albinism in Jinja , Uganda

Gaylord¹

2023

Preprint

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Background Depression is among the common psychiatric disorders with high prevalence in the general population across the world. Studies carried out on specific populations have shown that this prevalence is higher in vulnerable populations including people living with albinism. Despite the fact that several aspects linked with it have been found among people with oculocuteneous albinism in the Busoga region, data have remained unclear locally. Limited information is available regarding prevalence of depression, its associated factors and health related quality of life in the study area.The main objective of the present study was to determine the health related quality of life and factors associated with depression among people with oculocutaneous albinism in Jinja,Uanda. Methods A cross-sectional design was used to capture data from a study sample size of 384 adults living with oculocutaneous albinism who were involved in completion of the screening tests for depression Hopkins Symptom Checklist-25(HSCL-25).The summation of scores for depression were averaged and the probable depression determined for each participant using a cut-off of 1.75. Logistic regression analyses were used to examine associations between depression and associated factors. Dermatology life quality index (DLQI) was used to assess the health related quality of life.The DLQI was calculated by the summation of the score of each question resulting in a maximum of 30 and a minimumof 0.The higher was the score,the more quality of life was impaired. Results The analyses revealed that the prevalence of depression among people with oculocutaneous albinism in jinja city stands at 65.4 %. The risk of depression was significantly associated with age (AOR = 1.059, 95% CI = 1.020–1.100, P = 0.003), history of diabetes mellitus (AOR = 12.030, 95% CI = 1.117–12.961, P = 0.040) and taking chronically medication (AOR = 6.583, 95% CI = 1.618–26.782, P = 0.008).Family support (AOR = 0.505, 95% CI = 0.286–0.892, P = 0.019) and marital status (AOR = 0.505, 95% CI = 0.286–0.892, P = 0.019) were significantly protective factors.The mean Dermatology Life Quality Index scores was 14.55.Oculocutaneous albinism had no effect on the quality of life of only 5.7% of the participants. On the remaining 95% affected participants, 48.7% were largely affected. Conclusions These findings show that the estimated prevalence of depression among people with oculocutaneous albinism in the study area is high and worrying and oculocutaneous albinism highly impacts negatively the quality of life of people with oculocutaneous albinism. Strategies targeted at early interventions and ultimately depression prevention need urgent attention in order to reduce risk factors of the disease and improve the health related quality of life of People with oculocutaneous albinism in the study area.

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“…in the skin is to absorb ultraviolet (UV) light and prevent damage. Without melanin the skin is more prone to sunburn and skin cancer" [3]. In addition, "lack of melanin results in a triad of signs which is pale skin, light hair, and pale iris colour.…”

Section: Original Research Articlementioning

confidence: 99%

“…The study explores the life experiences of people with albinism in Gaborone, Botswana and the misconceptions of societies towards such people [1,2]. "Derived from the Latin word 'albus' meaning 'white', oculocutaneous albinism (OCA) is a relatively rare genetic disorder in which the body does not biosynthesize melanin" [3]. "Melanin is a photo protective protein whose role…”

Section: Introductionmentioning

confidence: 99%

Life Experiences of People with Albinism in Gaborone, Botswana

Moseki-Lowani,

Maripe,

Mpapho

2023

CJAST

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It has been observed that, despite the efforts by various stakeholders to raise awareness on oculocutaneous albinism and research around the issue globally, regionally, and nationally, stigma and marginalization plague many communities in Botswana. The study explores the life experiences of people with albinism. It draws from the direct testimony of people with albinism. In addition, the study contributes to existing knowledge on a visible disability more than its physical and mental limitations. Thus, it promotes awareness of what appearance means cross-culturally and suggest ways in which the situation could be addressed and enhanced.

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Oculocutaneous albinism: an African perspective

Cited by 7 publications

References 14 publications

Influence of social stigma on subjective well‐being of persons with albinism in Ghana

Influence of social stigma on subjective well‐being of persons with albinism in Ghana

Health-related quality of life and factors associated with depression among people with oculocutaneous albinism in Jinja , Uganda

Life Experiences of People with Albinism in Gaborone, Botswana

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