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

LIKUMBO, Naomi
DE VILLIERS, Tania
KYRIACOS, Una
2021

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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.

Reducing albinism related stigma in Tanzania: an exploration of the impact of radio drama and radio interview

DE GROOT, T M M
VELDMAN, M
JACQUET, W
PETERS, R M H
VANWING, T
MEURS, P
2021

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Reducing stigma is key to improving the wellbeing of people with albinism in Tanzania. This study aimed to obtain more insight into the effects of two radio interventions with regard to albinism-related stigma: a radio drama and a radio interview. Assessment of the radio interventions was based on two attitude measurement instruments (The Albinism Explanatory Model Interview Catalogue Community Stigma Scale and the Albinism Social Distance Scale), an entertainment scale, and two informal (group) interviews. In total, 111 community members participated in the assessment prior to the radio drama, and 65 after. In the case of the radio interview, 123 community members participated in the assessment prior to the radio show, and 77 after. Following the radio drama, a significant reduction was found in terms of community stigma, and a reduction in social distance was found after both interventions. The entertainment score for both interventions was high, but significantly higher for the radio drama. The respondents indicated that they had gained more understanding of albinism as a result of the interventions, and were positive about this type of education. The current study shows that a radio show in which the listener interacts with someone with albinism can contribute to a reduction in stigma, and demonstrates that different types of radio intervention can have different outcomes.

Women’s experiences of living with albinism in Taiwan and perspectives on reproductive decision making: A qualitative study

HUANG, Mei-Zen
CHEN, Li-Li
HUNG, Shu-Ling
PUTHUSSERY, Shuby
2020

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People with Albinism tend to face multiple adverse physical, psychological and social consequences. Very little is known about experiences of women with Albinism and their deliberations whilst making reproductive decisions. This study aimed to explore lived experiences of women with Albinism and to understand their perspectives on reproductive decision making. Qualitative in-depth semi-structured interviews were conducted with ten women with Albinism in Taiwan. Five key themes emerged from the accounts which were centred around the sense of discrimination that they felt whilst growing up, their strive for normality, making difficult choices in their reproductive decisions, desire to protect children from harm and reflections of parenting struggles from own experiences and the experiences of their parents. We call for global and national policy makers and practitioners to introduce explicit measures to challenge the myths, stereotypes and prejudices associated with Albinism including specific interventions towards supporting women in pregnancy decision making.

Pats Journal

LARUBI, Pat Robert
2020

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Pats Journal – Albinism News Network (ANN) is an online story telling platform where people come to discover, relate and share positive and inspiring stories of persons with albinism and those around us helping make a difference in the world. The platform features in-depth news analysis, information, interviews, opinion and coverage of events promoting public awareness and social inclusion of persons with albinism

 

Overall, the portal was aimed at creating public awareness across the East African Region and the world at large about challenges face by PWA in Africa in a bid to reduce stigma, social oppression, break myth and showcase the potential of PWA through a well structure and unlimited media space.

Case studies on leaving no one behind. A companion volume to the Development Co-operation Report 2018

ORGANISATION FOR ECONOMIC COOPERATION AND DEVELOPMENT (OECD)
December 2018

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These case studies complement the 2018 Development Co-operation Report: Joining forces to leave no one behind. Case study contributors share knowledge and lessons on what it takes to answer the pledge of the 2030 Agenda for Sustainable Development to leave no one behind through national and sub-national policies, strategies and programmes as well as international development co-operation projects, programmes and partnerships.

 

Chapters include:

 

 

‘Black on the inside’: albino subjectivity in the African novel

LIPENGA, Ken Junior
NGMIRA, Emmanuel
2018

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The last decade has seen increased attention to the treatment of people with albinism in several African countries, particularly the peril they find themselves in due to stigma and superstition. As a way of countering these misconceptions, there has been educative activism from legal, medical as well as religious perspectives. In this paper, we draw upon a different discourse- literary representation- arguing that in selected African novels, the authors employ a variety of strategies that counter harmful stereotypes about albinism, and in the process act as literary interventions that enable an appreciation of the person behind the skin condition. Drawing from insights in Literary Disability Studies, the discussion examines the representation of albinism in four African novels: Petina Gappah’s The Book of Memory (2015), Meg Vandermerwe’s Zebra Crossing (2013), Unathi Magubeni’s Nwelezelanga: The Star Child (2016), and Jenny Robson’s Because Pula Means Rain (2000), and highlights the way albinism is presented as bodily condition that intersects with other experiences on the continent, including indigenous epistemologies, gender, sexuality and family relationships. 

 

Disability and the Global South, 2018, Vol.5, No. 2

Report of the Independent Expert on the enjoyment of human rights by persons with albinism on her mission to the United Republic of Tanzania

ERO, Ikponwosa
December 2017

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In accordance with the mandate set out in Human Rights Council resolution 28/6 and at the invitation of the Government of the United Republic of Tanzania, the Independent Expert on the enjoyment of human rights by persons with albinism, Ikponwosa Ero, conducted an official visit to the United Republic of Tanzania from 18 to 28 July 2017. The objective of the visit was to assess the human rights situation of persons with albinism throughout the country, with particular attention to be given to the relatively high number of reports of attacks against them

African Disability Rights Yearbook volume 5 2017

NGWENA, Charles
et al
2017

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This volume of the African Disability Rights Yearbook is divided into four sections presenting articles, country reports, commentaries on regional developments and a book review. The first section A of the journal presents a number of articles on issues affecting people with disabilities in Africa, ranging from education and rights of children with disabilities to albinism. Section B presents country reports on Djibouti and Madagascar. Section C presents two articles: one on mental health and the other on disability rights developments in the East African Community post-2012. Finally a review of E. Barnes’s 2016 book "The minority body: A theory of disability" is given.

 

Hear my voice: old age and disability are not a curse. A community-based participatory study gathering the lived experiences of persons with disabilities and older people in Tanzania

MRISHO, Mwifadhi
FAKIH, Bakar
GREENWOOD, Margo
STEFF, Marion
2016

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Community based participatory research (CBPR) was used to provide evidence on the specific nature and experiences of persons with disabilities and older people from their own perspectives in Tanzania, through the lens of social, political, economic and cultural inclusion. The aim was to strengthen efforts to provide services for and improve the lives of people living in the rural and urban settings of Nachingwea and Kibaha Urban Municipal Council. Twenty-nine peer researchers (nine persons with disabilities, 10 older people and 10 Tanzanian Non-Governmental Organisation (NGO) members working in these communities) were involved in the study. A total of 106 stories were collected. Eight priority areas emerged and were chosen by peer researchers for further discussion in groups: access to education and quality learning; access to health services; issues fed back from NGOs; poverty relating to income and dependence; attitudes towards witchcraft and albinism; relationship difficulties and marriage breakdowns; sexual violence and gender issues; poor treatment from family
 

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