Resources search

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

LIKUMBO, Naomi
DE VILLIERS, Tania
KYRIACOS, Una
2021

Expand view

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.

These rights are mine: disability rights among refugees and the host community in Tanzania

MURIITHI, Kevin
MANGE, Sansom
DICKSON, Edson
February 2020

Expand view

The International Rescue Committee has been working in Tanzania with persons with disabilities in Nyarugusu refugee camp and the surrounding host community in Kasulu district since 2015. The IRC’s These Rights are Mine (TRM) project – a 30-month project funded by the European Commissions Instrument for Democracy and Human Rights (EIDHR) – uses a rights-based approach to ensure that persons with disabilities are able to claim their rights and that government authorities and civil society organizations acting on their behalf are able to deliver on these rights. This survey aims to establish baseline information about disability rights in the IRC’s area of operations, assessing the needs of persons with disabilities as well as barriers faced by them in everyday life

Guidelines. Inclusion of persons with disabilities in humanitarian action

IASC TASK TEAM ON INCLUSION OF PERSONS WITH DISABILITIES IN HUMANITARIAN ACTION
July 2019

Expand view

The guidelines set out essential actions that humanitarian actors must take in order to effectively identify and respond to the needs and rights of persons with disabilities who are most at risk of being left behind in humanitarian settings. The recommended actions in each chapter place persons with disabilities at the centre of humanitarian action, both as actors and as members of affected populations. They are specific to persons with disabilities and to the context of humanitarian action and build on existing and more general standards and guidelines. These are the first humanitarian guidelines to be developed with and by persons with disabilities and their representative organizations in association with traditional humanitarian stakeholders. Based on the outcomes of a comprehensive global and regional multi-stakeholder consultation process, they are designed to promote the implementation of quality humanitarian programmes in all contexts and across all regions, and to establish and increase both the inclusion of persons with disabilities and their meaningful participation in all decisions that concern them. 

 

Chapters include:

  • What to do - key approaches to programming
  • Data and information management
  • Partnerships and empowerment of organisation of people with disabilities
  • Cross cutting considerations
  • Accountability to affected people and protection from sexual exploitation and abuse
  • Humanitarian response options
  • Stakeholder roles and responsibilities
  • What sectors need to do
  • Camp coordination and camp management
  • Education
  • Food security and nutrition
  • Livelihoods
  • Health
  • Protection
  • Shelter and settlements
  • Water, sanitation and hygiene

Situation of persons with disabilities in Lebanon.

COMBAZ, Emilie
July 2018

Expand view

This K4D helpdesk report identifies information since 2013 concerning:

  • data on the state of persons with disabilities in Lebanon
  • assessments of laws on the rights of persons with disabilities in Lebanon
  • analyses of the political, social, cultural, and economic context for persons with disabilities in Lebanon

Issues particular to persons with disabilities amongst Syrian refugees within these aspects are identified where possible.

The state of knowledge and gaps are discussed. 

Invisible victims of sexual violence. Access to justice for women and girls with disabilities in India

HUMAN RIGHTS WATCH
April 2018

Expand view

This report is based on 17 cases of sexual violence against women and girls with disabilities in eight Indian states. It comes five years after The Criminal Law (Amendment) Act, 2013 (the 2013 amendments) were adopted in India. It follows Human Rights Watch’s November 2017 report “Everyone Blames Me”: Barriers to Justice and Support Services for Sexual Assault Survivors in India, which found that rape survivors still face significant barriers obtaining justice and critical support services because legal and other reforms have not been fully realised.

This report finds that while the 2013 amendments have made significant progress in responding to the widespread challenges that victims of sexual violence endure, they have yet to properly develop and implement support for survivors with disabilities in the form of trainings and reforms throughout the criminal justice system. It highlights gaps in enforcement and calls for concrete measures to address the needs of women and girls with disabilities seeking justice for abuse. 

Everybody Matters: Good practices for inclusion of people with disabilities in sexual and reproductive health and rights programmes

Van SLOBBE, Caroline
November 2017

Expand view

This publication provides introductory chapters from two activists who work to create better opportunities for people with disabilities in Nigeria and India. Subsequently, the challenges that organisations worldwide have encountered whilst improving the access to and knowledge of sexual and reproductive health and rights for people with disabilities are presented. Ways in which they managed to find solutions and the results achieved are reviewed. Some cases show the importance of a more personal approach whilst others emphasise the advantage of changing systems and policies. Different regions, types of disabilities and various SRHR-topics are reflected in these stories. All cases provide lessons learnt that contribute to a set of recommendations for improved responses. The closing chapter highlights the challenges, solutions, and ambitions that are presented and lead up to a concise overview of recommendations.  

Good practice examples include:

A shift in SRH programming (Nepal)

Breaking Barriers with performance art (Kenya)

Her Body, Her Rights (Ethiopia)

People with disabilities leading the way (Israel Family Planning Association)

Best Wishes for safe motherhood (Nepal)

It’s my body! (Bangladesh)

Calling a spade a spade (Netherlands)

Four joining forces (Colombia)

Change agents with a disability (Zimbabwe)

Tito’s privacy and rights (Argentina)

Sign language for service providers (Kenya)

Community Action Research in Disability (CARD): An inclusive research programme in Uganda

HARTLEY, Sally D
YOUSAFZAI, AK
KAAHWA, MG
FINKENFLÜGEL, H
WADE, A
BAZIRAKE, G
DRACHLER, ML
SEELEY, J
ALAVI, Y
MATAZE, W
MUCURNGUZI, E
2017

Expand view

The ideology of Emancipatory Disability Research (EDR) reflected in the phrase ‘Nothing about us without us’, was first put forward in the 1990s. Although it aimed to place research control in the hands of the ‘researched’, i.e., people with disability, this rarely happens even today, 25 years later.

 

The Community Action Research on Disability (CARD) programme in Uganda embraced and modified the EDR approach, recognising the need for including people with disability in the research process from concept to outcome, and nurturing participation and collaboration between all the stakeholders in achieving action-based research. The research teams always included people with disability and staff from Disability People’s Organisations (DPOs) as well as academics and service providers. It endeavoured to generate and carry out research around issues that mattered to people with disability and their families. Leadership roles were assigned by team members. The objectives of the CARD programme were: (1) to fund teams to carry out action-based research on disability in Uganda; (2) to develop research and administrative capacity to manage the initiative within the academic registrar’s office at Kyambogo University; (3) to incorporate new knowledge generated from the studies into the ongoing local community-based rehabilitation and special education courses; and, (4) to ensure wide dissemination of research findings to all stakeholder groups.

 

CARD ran for 5 years, commissioning 21 action research studies in the field of disability and community-based services. This paper describes the process, presents the 12 completed studies, examines the extent to which the objectives were achieved and evaluates the experiences of the participating research teams, particularly in relation to the inclusion of its members with disability. It concludes with recommendations for future initiatives designed to promote validity, good value and inclusive approaches in disability research.

Virtual knowledge center to end violence against women and girls

UNITED NATIONS ENTITY FOR GENDER EQUALITY AND THE EMPOWERMENT OF WOMEN
2017

Expand view

This Knowledge Centre is designed to serve the needs of policymakers, programme implementers and other practitioners dedicated to addressing violence against women and girls. It's primary purpose is to encourage and support evidence-based programming to more efficiently and effectively design, implement, monitor and evaluate initiatives to prevent and respond to violence against women and girls. To achieve this, the Global Virtual Knowledge Centre offers a ‘one stop’ service to users by making available the leading tools and evidence on what works to address violence against women and girls. It draws on expert recommendations, policy and programme evaluations and assessments, and fundamentally, on practitioners’ experiences from around the world

Global database on violence against women

UN WOMEN
2017

Expand view

"Violence against women and girls is one of the most systematic and widespread human rights violations. According to a 2013 global review of available data, 35 per cent of women worldwide have experienced either physical and/or sexual intimate partner violence or non-partner sexual violence. Eliminating such violence globally requires intensive efforts, which led world leaders to establish an online tool that increases opportunities to exchange experiences and strengthen knowledge to prevent and stop violence against women. The Global Database on Violence against Women provides easy access to comprehensive and up-to-date information on measures undertaken by United Nations Member States to address all forms of violence against women.

The Database is designed to:

  • Provide easy access to comprehensive and up-to-date information on measures undertaken by Governments to address all forms of violence against women;
  • Increase opportunities for exchange of experiences in addressing violence against women;
  • Strengthen the knowledge-base for effective policy responses to prevent and address violence against women; and
  • Encourage the further collection, availability, use and dissemination of data on violence against women, as well as analysis of such data"

Guidance document : effective use of international human rights monitoring mechanisms to protect the rights of persons with disabilities

THEYTAZ-BERGMAN, Laura
TROMEL, Stefan
May 2010

Expand view

This guidance document provides practical strategies and advice to disabled people's organisations (DPOs) and DPO coalitions on the international human rights mechanisms. It provides details on the reporting process of the UN Convention on the Rights of Persons with Disabilities (UNCRPD), raises awareness on the need to establish national DPO coalitions, and offers assistance for DPOs on producing effective reports for submission to the UNCRPD Committee. It also provides guidance on the monitoring process and includes information on the use of other human rights mechanisms. This document would be useful to global, regional and national DPOs engaging in the UNCRPD reporting process

The gender-based violence information management system user guide

GENDER BASED VIOLENCE IMFORMATION MANAGEMENT SYSTEM (GBVIMS)
2010

Expand view

This comprehensive user guide explains what the Gender-Based Violence Information Management System (GBVIMS) is, why it is important and how it works. It is also a training tool on how to use the GBVIMS and related tools through hands-on, self-learning activities. It is intended to be both a reference document and a training manual for both service providers with specific services in place for GBV survivors, such as case management or health services, and agencies or actors coordinating multisectoral GBV interventions within a humanitarian context. This could include local national and international non-governmental organizations (NGOs), state actors, community-based organizations (CBOs) and/or UN agencies operating within a humanitarian context
Note: free registration is required to access the guide
Note: the guide is available as one document, or as individual chapters and annexes. A workbook is also available

Operational guide for implementation of IICCHAA project

INDIAN INITIATIVE OF CHILD CENTRED HIV & AIDS APPROACH (IICCHAA)
2008

Expand view

This operational guide provides a broad direction for implementing memory work in India in the field, based on a communication needs assessment carried out as part of the Indian Initiative for Child Centred Approaches to HIV & AIDS (IICCHAA). The guide is divided into two sections: how to roll out the training effectively at field level and some basic information about HIV and AIDS

WHO ethical and safety recommendations for researching, documenting and monitoring sexual violence in emergencies

WORLD HEALTH ORGANIZATION (WHO)
June 2007

Expand view

This document builds on previous WHO publications and explores the different reasons for collecting information about sexual violence in emergency situations. It applies to all forms of enquiry about sexual violence and makes a number of recommendations that are intended to ensure that the necessary safety and ethical safeguards are in place at the beginning of any information gathering exercise. The document sets out the key safety and ethical issues that need to be addressed and the questions that need to be asked. There are examples of good practice and details of further information and resources that are available. This document is not intended to be a standalone guidance document but is designed to complement existing internationally-agreed ethical guidelines for research and to inform ethics review processes

networklearning.org

NETWORK LEARNING
December 2005

Expand view

This website aims to make high quality manuals, field books and training courses easily available to groups who need them (free of cost to those in the South but with a contribution of $25 requested from those in the North); to encourage colleagues to be open to new knowledge and skills, to plan and stick to self-guided learning; to introduce topics which may be new to some people an to link users to resources, useful organisations, websites and materials; and to provide a place for users working in different countries in the South to stay informed. The resources are available online and cover a variety of topics in a clear, easy to understand format. It provides a number of guidelines including guidelines for writing reports [http://www.networklearning.org/writing-reports.html] and a simple guide to the web [http://www.networklearning.org/web.html]

Integrating intellectual property rights and development policy : report of the commission on intellectual property rights

COMMISSION ON INTELLECTUAL PROPERTY RIGHTS (CIPR)
September 2002

Expand view

This detailed and thorough report considers whether and how intellectual property rights (IPRs) can play a role in achieving the Millenium Development Goals. It explores the potential benefits of IPRs in stimulating economic growth, and the associated benefits in terms of productivity and reduced poverty. It considers also the barriers that IPRs may present to developing economies, including discouraging invention, research, technology transfer, domestic production and driving up the costs of medicines and agricultural inputs. Key issues covered in successive chapters include: current evidence about the impact of IPRs in developing countries; development of and access to medicines; protection of plants and genetic resources; the Convention on Biological Diversity, traditional knowledge, cultural expressions and geographic indicators; copyright and patents; IPR legislation for developing countries; international and national institutional framework for IPRs

Information communication technologies, poverty and empowerment

SKUSE, Andrew
2001

Expand view

Provides a framework for pro-poor ICT based initiatives, in the context of globalisation and the rights to information and freedom of expression. Discusses 'old' versus new and emerging ICTs, concluding that the lure of technological and infrastructural solutions has tended to divert attention away from ICTs that poor people actually use - but that the convergence of old and new ICT presents opportunities. Suggests that donors should support the private sector and governments in developing pro-poor strategies. Advocates careful strategic planning and judicious use of appropriate media in every communications initiative

National policy on HIV/AIDS for Zimbabwe 1999

GOVERNMENT OF ZIMBABWE
1999

Expand view

Sets out Zimbabwe's national policy and guiding principles on HIV/AIDS in relation to public health, care for people living with HIV/AIDS, human rights, gender, information and education about HIV/AIDS, and HIV/AIDS/STI research

Development gateway

DEVELOPMENT GATEWAY FOUNDATION

Expand view

The Development Gateway portal provides a space for communities to share experiences on development efforts. The portal supports the Development Gateway Foundation's knowledge-sharing efforts through services such as an online directory for information on development projects (AiDA), an electronic procurement market (dgMarket), information on major development topics (Topic Pages), and links to a growing network of country-level initiatives (Country Gateways). By offering users virtual interactive communities centered on development issues, the portal's Topic Pages encourage knowledge-sharing and help improve collaboration among development practitioners. Expert guides and global topic advisors work with their communities to highlight the most relevant and useful resources available on the Internet. The topic pages enable you to share knowledge and locate resources on a variety of development topics; build a community of experience around development topics through individual member contributions; receive free email alerts and newsletters; and make connections with thousands of registered users

We can do [blog]

SHETTLE, Andrea

Expand view

We Can Do is blog shares information about people with disabilities in developing countries including conferences, events, job posts, news, resources, and case studies. In particular, it alerts people to pragmatic resources and toolkits that are free or low-cost and that they can put to immediate use in the field with disabled people living in poverty in developing countries. It includes a resource 'Refugees with disabilities' facts and solutions

Global disability rights library

THE WIDERNET PROJECT

Expand view

The Global Disability Rights Library (GDRL) is an enhanced online version of the WiderNet Project’s eGranary Digital Library, an off-line information storage and collaboration platform that provides internet-like access to digital resources without requiring internet connectivity. The resources include websites, reports, journals, books and software applications relating to various disability and development topics, such as independent living, advocacy, education, transportation, public policy, employment, vocational rehabilitation, and other topics. This library is useful for policymakers, advocates and people with disabilities

Pages

E-bulletin