Factors Associated with Negative Attitudes towards Albinism and People with Albinism: A Case of Households Living with Persons with Albinism in Lake Zone, Tanzania

Masanja, Methusela Mishael; Imori, Marko Mwita; Kaudunde, Ismail Juma

doi:10.4236/jss.2020.84038

Cited by 7 publications

(4 citation statements)

References 6 publications

Supporting

Mentioning

Contrasting

Unclassified

Order By: Relevance

“…Although the majority of literature focused on understanding disability stigma has been carried out in high-income settings [ 5 , 6 , 7 ], in the last decade, an increasing number of scholars have conducted studies looking at the negative stereotypes, prejudices and inaccurate beliefs that shape disability stigma in the Global South [ 3 , 8 , 9 , 10 ]. Most of these studies have described how these stigmatizing beliefs are often driven by a combination of personal and societal factors, ranging from misconceptions concerning the causes of different impairments (e.g., disability to be seen as a form of curse or punishment); assumptions about the lack of capabilities of people with disabilities; or discriminatory practices that actively endorse separation between people with and without disabilities [ 3 , 9 , 11 , 12 ]. Yet, there is a dearth of comparative studies that examine the perspectives of both people with and without disabilities of disability stigma and discrimination, including how the use of assistive technology may shape stigmatizing interactions.…”

Section: Introductionmentioning

confidence: 99%

“When They See a Wheelchair, They’ve Not Even Seen Me”—Factors Shaping the Experience of Disability Stigma and Discrimination in Kenya

Barbareschi

Carew

Johnson

et al. 2021

IJERPH

View full text Add to dashboard Cite

Disability stigma in many low- and middle-income countries represents one of the most pervasive barriers preventing people with disabilities from accessing equal rights and opportunities, including the uptake of available assistive technology (AT). Previous studies have rarely examined how disability stigma may be shaped through factors endemic to social interactions, including how the use of assistive technology itself may precipitate or alleviate disability stigma. Through two strands of work, we address this gap. Via a series of focus groups with Kenyans without disabilities (Study 1) and secondary data analysis of consultations with Kenyans with disabilities and their allies (Study 2), we identify shared and divergent understandings of what shapes disability stigma and discrimination. Specifically, Kenyans with and without disabilities were cognizant of how religious/spiritual interpretations of disability, conceptions of impairments as “different” from the norm, and social stereotypes about (dis)ability shaped the experience of stigma and discrimination. Moreover, both groups highlighted assistive technology as an influential factor that served to identify or “mark” someone as having a disability. However, whereas participants without disabilities saw assistive technology purely as an enabler to overcome stigma, participants with disabilities also noted that, in some cases, use of assistive technologies would attract stigma from others.

show abstract

Section: Introductionmentioning

confidence: 99%

“When They See a Wheelchair, They’ve Not Even Seen Me”—Factors Shaping the Experience of Disability Stigma and Discrimination in Kenya

Barbareschi

Carew

Johnson

et al. 2021

IJERPH

View full text Add to dashboard Cite

show abstract

“… Access to education. A significant amount of research-derived evidence cites access to quality education for children with albinism (56%, n = 122), including (i) the negative impact of lack of teachers’ knowledge about the required accommodations for vision impairment [ 43 , 60 , 68 , 101 , 118 ]; (ii) bullying by classmates and teachers [ 5 , 7 , 89 , 119 , 133 , 142 , 150 , 159 ]; (iii) the benefits of integrated (inclusive) education, given the effects of separation from family for children in boarding schools [ 36 , 78 , 89 , 149 ]; and (iv) issues around safety while at school, and while coming and going from school [ 69 , 80 , 124 ]. The grey literature provides guidance for policy for albinism-friendly schools [ 115 , 121 , 122 ], with an emphasis that secure schools should be part of a government response [ 89 , 101 ].…”

Section: Results: Diffracting and Weaving Storylinesmentioning

confidence: 99%

“…[ 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 ]…”

Section: Results: Diffracting and Weaving Storylinesunclassified

Mapping a research-advocacy-policy agenda on human rights and albinism: a mixed methods project

Reimer-Kirkham,

Astle,

Ero

et al. 2024

Int J Equity Health

View full text Add to dashboard Cite

Background Persons with albinism face challenges to their wellbeing, safety, and security, ranging from vision impairment and skin cancer to stigma and discrimination. In some regions, they also face human rights atrocities including mutilation and murder. Research on human rights and albinism is a relatively new field that has gained momentum since the United Nations appointment of an Independent Expert on the enjoyment of human rights by persons with albinism. In this paper, we present the results of a mixed methods study undertaken to identify priorities for research, advocacy, and policy on albinism and human rights. Methods The first component was a synthesis of peer-reviewed and grey literatures at the nexus of albinism, spiritual/cultural beliefs and practices, and human rights. We then conducted a priority-setting survey, informed by Delphi methods, on extant knowledge-practice gaps and research, advocacy, and policy priorities. Inclusion criteria included demonstrated expertise in the field (e.g., peer-reviewed publications, funded research), membership on national or international associations, or advocacy (civil society organizations) of more than 2 years in albinism and human rights. Thereafter, we gathered leading researchers, policy-makers, and civil society stakeholders for a Roundtable to gain consensus on these priorities. Results Access to skin and vision care, and education were not deemed high priority for research, likely because the evidence supporting the need for these is well established. However, they were priorities for advocacy and policy: what is needed is mobilization of this evidence through advocacy and implementation of such services (policy). Other social determinants of health (rurality, poverty, and gender equality) are present as subtext in the findings, more so than priorities for research, advocacy, or policy, despite their preponderance in the lives of persons with albinism. Research was prioritized on stigma and discrimination; advocacy; and witchcraft, but with some differentiation between Global North and Global South priorities. Priorities for research, advocacy, and policy vary in keeping with the explanatory frameworks at play, including how harmful practices and witchcraft are viewed. Conclusions The lived experience of albinism is profoundly shaped by the social determinants of health (SDOH). Threats to the security and well-being of persons with albinism should be viewed through a human rights lens that encompasses the explanatory frameworks at play.

show abstract

“… 23 , 24 A recent study further showed that unfavourable attitudes towards persons with albinism were associated with illiteracy. 44 The implication being that higher levels of education exposes one to more accurate knowledge of causes of health conditions that may lessen negative attitudes. Indeed, in our previous report regarding rural youth's understanding of the gene–environment contribution to podoconiosis, we found that youth with a formal education had more accurate knowledge about causes of podoconiosis.…”

Section: Discussionmentioning

confidence: 99%

A cross-sectional survey to assess the risk factors associated with stigmatizing attitudes towards patients with podoconiosis among rural youth in southern Ethiopia

Engdawork

Davey

Ayode

et al. 2020

Transactions of the Royal Society of Tropical Medicine and Hygiene

View full text Add to dashboard Cite

Background Many health conditions are associated with stigma due to beliefs about their causes and the physical changes experienced by patients. Among such conditions are several neglected tropical diseases (NTDs). Podoconiosis, classified as an NTD, is a form of lymphoedema caused by the co-influence of genetic and environmental factors. It is a major public health problem in Ethiopia and is associated with intense stigma. Despite this, little is known about the factors contributing to stigmatizing attitudes against patients with the disease. Methods A cross-sectional survey was conducted in southern Ethiopia to analyse the attitudes of rural youth and associated risk factors for stigmatizing attitudes towards patients with podoconiosis, with the aim of informing stigma reduction strategies. Results The survey included 336 randomly selected youth. Of the 177 (52.7%) youth who held more stigmatizing attitudes toward patients with podoconiosis, 105 (59.3%) were females and 171 (96.6%) did not have affected friends. Accurate knowledge about gene–environment influences and rejection of infectious causes of podoconiosis were associated with less stigmatizing attitudes. Conclusions Improving understanding of the gene–environment interaction and dispelling beliefs about infectious causes may reduce negative attitudes about podoconiosis. Affected youth may play an important role as agents of change to spread non-stigmatizing messages.

show abstract

Factors Associated with Negative Attitudes towards Albinism and People with Albinism: A Case of Households Living with Persons with Albinism in Lake Zone, Tanzania

Cited by 7 publications

References 6 publications

“When They See a Wheelchair, They’ve Not Even Seen Me”—Factors Shaping the Experience of Disability Stigma and Discrimination in Kenya

“When They See a Wheelchair, They’ve Not Even Seen Me”—Factors Shaping the Experience of Disability Stigma and Discrimination in Kenya

Mapping a research-advocacy-policy agenda on human rights and albinism: a mixed methods project

A cross-sectional survey to assess the risk factors associated with stigmatizing attitudes towards patients with podoconiosis among rural youth in southern Ethiopia

Contact Info

Product

Resources

About