Impact of interventions of the Murder of People with albinism in lake Victoria a case of Shinyanga region

Kisanga, Peter Sadikiel; Mbonile, M.

doi:10.56279/jgat.v37i1.140

Cited by 3 publications

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“…May limit outdoor activities due to (i) not having protective clothing and eyewear, and (ii) because of fear of violence n = 104 (48%) [ 6 – 8 , 10 – 12 , 29 – 80 ] n = 58 (45%) [ 3 , 27 , 81 – 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 – 8 , 10 , 11 , 29 , 30 , 32 , 33 , 35 – 37 , 39 – 45 , 47 – 50 , 53 – 56 , 58 – 62 , 64 – 66 , 68 – 71 , 73 , 75 , 77 – 80 , 125 – 152 ] n = 74 (57%) [ 27 , 81 , 82 , 84 – 86 , 88 – 95 , 97 – 102 , <...…”

Section: Results: Diffracting and Weaving Storylinesmentioning

confidence: 99%

“…[ 5 – 8 , 10 , 11 , 29 , 30 , 32 , 33 , 35 – 37 , 39 – 45 , 47 – 50 , 53 – 56 , 58 – 62 , 64 – 66 , 68 – 71 , 73 , 75 , 77 – 80 , 125 – 152 ]…”

Section: Results: Diffracting and Weaving Storylinesunclassified

“…[ 1 , 2 , 5 , 7 , 8 , 10 – 12 , 31 – 33 , 37 – 39 , 42 , 44 , 47 , 49 , 51 , 56 , 60 , 61 , 63 , 64 , 67 , 70 , 74 – 76 , 78 – 80 , 126 , 128 , 134 , 139 , 145 , 146 , 149 – 152 , 167 , 171 , 173 , 174 , 180 – 183 , 185 , 208 , 209 ]…”

Section: Results: Diffracting and Weaving Storylinesunclassified

“…Similarly, the lack of vision care impacts access to education (e.g., not being able to see the blackboard [ 6 , 31 , 81 , 154 ]. The grey literature substantiates these concerns, and in addition portrays civil society organizations as active in advocacy for and provision of vision and skin care (e.g., through mobile clinics) [ 33 , 39 ]. The survey respondents did not rate access to skin and vision care as a high priority for research, but did so for policy (the item “free eye and skin care was tied as #1 for policy initiatives in the Health and Social Policy cluster) and advocacy (the item “advocacy to improve skin care for PWA” was rated #1 among priorities for local advocacy strategies).…”

Section: Results: Diffracting and Weaving Storylinesmentioning

confidence: 99%

Section: Results: Diffracting and Weaving Storylinesmentioning

confidence: 99%

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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

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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.

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Section: Results: Diffracting and Weaving Storylinesmentioning

confidence: 99%

“…[ 5 – 8 , 10 , 11 , 29 , 30 , 32 , 33 , 35 – 37 , 39 – 45 , 47 – 50 , 53 – 56 , 58 – 62 , 64 – 66 , 68 – 71 , 73 , 75 , 77 – 80 , 125 – 152 ]…”

Section: Results: Diffracting and Weaving Storylinesunclassified

Section: Results: Diffracting and Weaving Storylinesmentioning

confidence: 99%

Section: Results: Diffracting and Weaving Storylinesmentioning

confidence: 99%

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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

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The Impact of Myths, Superstition and Harmful Cultural Beliefs against Albinism in Tanzania: A Human Rights Perspective

Kajiru

Isaack

2020

PER

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It cannot be denied that myths and superstitions have endured through history and that people have been affected by them since the beginning of time. Superstitious beliefs and myths that result in the victimization of persons with albinism (PWA) are centuries old, are present in cultural attitudes and practised around the world. In Africa and in Tanzania in particular, PWAs have also been targeted because of harmful speculation and unfounded myths which place their lives at risk. As members of society PWA have human rights that need to be protected against any kind of violation, particularly against being killed, tortured and discriminated against. This article analyses various legal provisions that protect the rights of PWA as articulated in various UN covenants and conventions as well as regional treaties and national laws. Secondary data are consulted to examine the extent of the erroneous beliefs which heavily fuel the persecution and killing of PWA. It is found that there are deep-seated myths, superstitions and harmful cultural beliefs the existence of which seems to pose a serious obstacle to the implementation of the law and the protection of the rights of PWA in Tanzania. The article recommends awareness-raising and education in general for Tanzanian society as an approach towards the protection of PWA.

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Malawian mothers’ experiences of raising children living with albinism: A qualitative descriptive study

Likumbo

Villiers

Kyriacos

2021

African Journal of Disability

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Background: Albinism in humans is characterised by a reduced amount of pigment (melanin) present in the skin, hair follicles and the eye; approximately 7000–10 000 Malawians of all ages are affected. Children with these features face extreme forms of human rights abuses, even death.Objectives: This study aims to describe Malawian mothers’ experiences, perceptions and understanding of raising children with albinism (CWA).Methods: The study was conducted in 2018 using a qualitative descriptive design, with purposive sampling and voluntary participation. Mothers, 18 years and older, who had given birth to a CWA and who attended the dermatology clinic of a local public hospital participated. An interview guide used during standardised, open-ended interviews was translated from English to Chichewa using forward and backward translation. Interviews were conducted in Chichewa, audio recorded, transcribed and forward and back translated from English to Chichewa. Thematic data analysis was employed.Results: The mean age of participants (N = 10) was 33 years; two had albinism. Emerging themes confirmed the existence of myths and stereotypes regarding albinism but from the mothers’ perspectives. Mothers reported: (1) some experiences of emotional pain, initially, but also love and acceptance of their children, despite adverse reactions of others; (2) their experiences of stigmatisation of their children and themselves, and of intended harm to their children, and (3) their own lack of knowledge and understanding of albinism.Conclusion: In our limited study, mothers’ self-reported experiences of raising CWA in Malawi highlight the need for educational programmes on albinism at national level, particularly for families with a CWA, health professionals and educators.

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Impact of interventions of the Murder of People with albinism in lake Victoria a case of Shinyanga region

Cited by 3 publications

References 1 publication

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

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

The Impact of Myths, Superstition and Harmful Cultural Beliefs against Albinism in Tanzania: A Human Rights Perspective

Malawian mothers’ experiences of raising children living with albinism: A qualitative descriptive study

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