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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.

Libraries, literacy and poverty reduction : a key to African development

MCHOMBU, Kingo
2006

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This research paper explores the potential for libraries to empower communities and fight poverty in Africa, through promoting literacy and providing access to relevant information. The author outlines the challenges that libraries and information centres in Africa face; and the potential that linkages with local and international partners could bring. Case studies illustrate how library networks in three countries address the challenges and serve their communities. Recommendations for library networks highlight the need for skilled personnel, partnerships, a remit to create and share local content, appropriate use of technology, and better and more responsive monitoring and evaluation. Recommendations for governments and donor agencies include creating national information policies, filling a 'coordinating' role in the information environment, investing in literacy, and expanding public library networks

Children with hydrocephalus and spina bifida in East Africa : can family and community resources improve the odds?

MILES, M
2002

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Hydrocephalus and spina bifida are life threatening conditions that often result in severe dsabilities. Risks are much reduced by immediate surgery and careful managment, but neither has been available for most of the sub-Saharan African population. This paper traces the growth of solutions and some socio-cultural resources that historically have supported family and community care for children with severe disabilities, mainly in Tanzania, and nearby countries. Some community-based rehabilitation (CBR) work with children with spina bifida and hydrocephalus is described, and challenges to the CBR approach are noted from the increased survival of people with disabilities requiring complex care. More appropriate information, recognition of indigenous knowledge, enlistment of community resources and financial assistance are needed to enhance the lives of East Africans with hydrocephalus, spina bifida and other severely disabling conditions

Bridge builders : African experiences with information and communication technology

NATIONAL RESEARCH COUNCIL
Office of International Affairs
1996

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This volume tells sixteen first-person accounts of how information and communication technologies (ICT) have been successfully introduced into institutions for the benefit of scientists and engineers in sub-Saharan Africa. The authors provide case studies that focus on the lessons learned in designing and implementing projects dealing with scientific and technological information (STI) and that examine the impacts these projects have had. The projects demonstrate just how much can be accomplished through leadership, dedication, and determination

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