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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.

HIV & AIDS awareness and training projects for blind and partially sighted persons in Africa : end of project report

NDUTA, Sally
December 2007

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This is the final report of the HIV & AIDS awareness and training projects for blind and partially sighted persons in Cameroon, Ghana, Kenya, Malawi, Rwanda and Tanzania. Including a summary of the workshops and trainings conducted across these countries, the aim is to highlight achievements, share research and put forth a set of recommendations about mainstreaming disability issues into HIV & AIDS programmes

HIV/AIDS communication in selected African countries : interventions, reponses and possibilities

PARKER, Warren
RAU, Asta
PEPPA, Penny
2007

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This review looks at communication activities around HIV prevention in 11 countires in South and East Africa operating in 2006 at a national level. It considers the variations in HIV epidemiology between countries, and the heterogeneity within them, and examines the different approaches to communication that are used. The country summaries include a synopsis of the epidemiology, indicators of knowledge, behaviour and service uptake and information about HIV and AIDS prevention communication, activities, approaches and funding

Learning from capacity building practice : adapting the 'Most Significant Change' (MSC) approach to evaluate capacity building provision by CABUNGO in Malawi

WRIGLEY, Rebecca
December 2006

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This paper presents the findings of an evaluation initiative of the capacity building services provided by CABUNGO, a local capacity building support provider in Malawi. Using the Most Significant Change approach - a story-based, qualitative and participatory methodology - this pilot exercise attempted to capture the changes resulting from capacity building and to enhance the learning and performance of CABUNGO. Organisational capacity development activities facilitated shifts in knowledge and practices but also in relationships and power dynamics. The paper also highlights advantages and constraints of the MSC approach

Programming experiences in early childhood development

UNITED NATIONS CHILDREN'S FUND (UNICEF)
November 2006

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This document presents examples and case studies from 21 countries. They demonstrate the benefit of cross-sectoral programming to support early childhood development, some building on early child care or education programme

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

Inside voices : CBR workers stories

OKUNE, Joan
Ed
2006

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This book is an output from three CBR writing workshops held in Kenya, Tanzania and Malawi with the aim to facilitate the capacity of CBR workers to communicate their experiences thus increasing documentation of CBR practices in Africa. The book contains articles based on participants’ experience of CBR and is useful to anyone interested in CBR experiences in Kenya, Tanzania and Malawi

Linking research : policy and practice to improve equity in health care in Malawi. REACH : challenging barriers to health care

DUNN, Alison
August 2005

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This briefing paper considers the findings of research conducted by REACH, an independent research trust in Malawi, on poverty and access to health care services at community level. It looks at the processes used by REACH to communicate findings into policy and practice. These include developing relationships with policymakers to enhance ownership of the research process, advocating research findings at policy fora, presenting findings generated by a range of research methods, and strategically framing the research in different discourses (eg poverty, gender) depending on the audience

The use of information and communication technologies (ICTs) in African public library services

ROSENBURG, Diana
July 2004

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This article concerns the use of computers in public libraries in developing countries. To investigate the current level of use of ICTs and plans for the future within the public library environment, a survey was undertaken of 22 public library services in ten English-speaking African countries. The results indicate great disparities in the level of access to computers between the countries, and within country, and indicate a need for more funding and appropriate training

Liverpool school of tropical medicine : Malaria knowledge programme. Annual report 2003-2004 : reduction in the suffering by improving the management of malaria through better intervention and control of malaria.’

LIVERPOOL SCHOOL OF TROPICAL MEDICINE (LSTM)
2004

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The report shows the overall activities of the Malaria Knowledge Programme during 2003-2004. It initially outlines the research activities and the new knowledge outputs. Using a framework developed by Liverpool School of Tropical Medicine's Vulnerability and Health Alliance the report contains an evaluation of the implications and effects of the research findings on those most vulnerable to the effects of malaria

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

Manual for the planning, organising and implementation of an awareness building campaign (ABC) for disabled persons' organisations

SOUTHERN AFRICA FEDERATION OF THE DISABLED (SAFOD)
et al
2002

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This manual is based on the experiences with planning, organisation, implementation and evaluation of the awareness building campaign (ABC) in Malawi in 1999-2001, which was jointly carried out by the Southern Africa Federation of the Disabled (SAFOD), the Federation of Disability Organisations of Malawi (FEDOMA) and the Federation of Disability Organisations of Norway (FFO)

Folk and traditional media for rural development

VAN DER STICHELE, Philippe
January 2000

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This is a report of a 1999 workshop in Malawi which explored how traditional media can be harnessed for development work. A major outcome was the reversal of roles between farmers and extension workers: the farmers taught extension workers about their culture and how they create media for disseminating as well as for sharing information, lessons and warnings in their village communities. Media explored in some depth included a girl's initiation ceremony, and a chief's installation ceremony, and centered around song and dance

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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