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Exploring Critical Issues in the Ethical Involvement of Children with Disabilities in Evidence Generation and Use

THOMPSON, Stephen
CANNON, Mariah
WICKENDEN, Mary
2020

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This research brief details the main ethical challenges and corresponding mitigation strategies identified in the literature with regard to the ethical involvement of children with disabilities in evidence generation activities. Evidence generation activities are defined as per the UNICEF Procedure for Ethical Standards in Research, Evaluation, Data Collection and Analysis (2015), as research, evaluation, data collection and analysis. The United Nations Convention on the Rights of the Child (art. 12) states that children have the right to form and express views freely in all matters affecting them and that the views of the child must be given due weight in accordance with her/his age and maturity.

 

The United Nations Convention on the Rights of Persons with Disabilities (art. 7) states that children with disabilities must enjoy human rights and freedoms on an equal basis with other children, and that they have a right to express their views freely and should be provided with assistance where necessary to realize that right. The two conventions in general, and these two articles specifically, frame this research brief, which aims to encourage practitioners to explicitly consider ethical ways to involve children with disabilities in evidence generation.

 

The findings detailed in this summary brief are based on a rapid review of 57 relevant papers identified through an online search using a systematic approach and consultation with experts. There was a paucity of evidence focusing specifically on the ethical challenges of involving children with disabilities in evidence generation activities. The evidence that did exist in this area was found to focus disproportionately on high-income countries, with low- and middle-income countries markedly under-represented.

Disability, CBR and inclusive development (DCID)

2016

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"Disability, CBR and Inclusive Development aim to enhance knowledge in the field of disability, addressing the needs of practitioners in the field (particularly those from developing countries), policy makers, disabled persons’ organizations and the scientific community. The journal encourages publication of information that is evidence-based, to improve current knowledge and programmes implementation, and will be openly and freely accessible to all readers" ”Published four times a year, previously published two times per year
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Developing human rights based indicators to support country monitoring of rehabilitation services and programmes for people with disabilities : a study protocol

SKEMPES, Dimitrios
BICKENBACH, Jerome
September 2015

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This paper seeks to develop a study protocol that can assess and improve the provision of rehabilitation services for people with disabilities across the world. The research targets a knowledge gap that exists whereby there are no indicators to reliable identify the performance of rehabilitation systems and monitoring technologies. The paper provides a detailed analysis of the issue before outlining and justifying a choice of methods for data collection and analysis, and the likely impact and use of the study results

BMC International Health and Human Rights, 15:25

Making it work guideline

GUY, Michael
September 2011

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Making it Work is a methodology for researching and documenting good practices on key disability issues, and then using this evidence to carry out effective advocacy in line with the principles of the Convention for the Rights of Persons with Disabilities .The methodology is straight-forward: it can be used to develop projects on any disability issue, in any country, at any level, by all types of organizations. Indeed many organizations throughout the world are now using this approach and sharing their good practice research and recommendations online. This guideline sets out a step-by-step approach for implementing such projects

Review of leprosy research evidence (2002-2009) and implications for current policy and practice

VAN BRAKEL, Wim
et al
September 2010

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"The ILEP Technical Commission (ITC) advises ILEP member associations on technical aspects of leprosy. A major review of research evidence in leprosy was published prior to the International Leprosy Congress in 2002. This current report updates that review based on research published between 2002-2009 and focuses on interventions for prevention, early diagnosis, chemotherapy, reactions, prevention of disability, stigma measurement and reduction and rehabilitation in leprosy"
Leprosy Review, Vol 81, Issue 3

Human subject regulations decision charts

OFFICE FOR HUMAN RESEARCH PROTECTIONS (OHRP)
September 2004

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These graphic aids are a guide to help decide if a research activity involving human subjects needs to be reviewed by an institutional review board (IRB) under the requirements of the US Department of Health and Human Services. The charts specify the following: whether an activity is research that must be reviewed by an IRB, whether the review may be performed by expedited procedures, and whether informed consent or its documentation may be waived. This document is useful for institutional review boards (IRBs), investigators, and others who are conducting research with human subjects

Double burden : a situation analysis of HIV/AIDS and young people with disabilities in Rwanda and Uganda

YOUSAFZAI, Aisha
EDWARDS, Karen
2004

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This analysis was carried out by Save the Children UK after reports from the field suggested that disabled people were not accessing HIV prevention information or services, despite being at higher risk of infection. It outlines ways in which disabled people are not fully included in safer-sex communications: for instance blind people hear talk about condoms, but have never held one; the necessity to have a sign-language interpreter for deaf people compromises their right to confidentiality; young girls with disabilities are more likely to be raped and are less able to negotiate safe sex. It recommends the greater integration of disabled people into health and HIV communications and further research to develop disabled-friendly means of communication

Persons with disability : study commissioned by the Corporate Planning Unit of the City of Joburg as a component of the human development agenda

WHITEHEAD, Melissa
2004

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The aim of this research is to highlight problems with, and identify gaps in, the human development agenda as they relate to persons with disability in the City of Johannesburg. The research report also gives an overview of the methodologies applied.
The report is useful for organisations and persons who want to learn more about the situation of disabled persons in Johannesburg. Also it is of interest for researchers and organisations that are developing research methodology and policy

Gender and health : technical paper

DOYAL, Lesley
1998

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This paper aims to indroduce health policy makers and planners to the concept of gender, and its role in health and health policy and in programme development. It shifts away from 'women in development' to explore 'gender and development', in other words approaching gender as a social rather than a biological idea. It aims to present an accessible review of the literature on gender and health

Chronic Poverty Research Centre

CHRONIC POVERTY RESEARCH CENTRE (CPRC)

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Website of the Chronic Poverty Research Centre, an international partnership of universities, research institutes and NGOs, which exists to focus attention on Chronic Poverty; stimulate national and international debate; deepen understanding of the causes of Chronic Poverty; and provide research, analysis and policy guidance that will contribute to its reduction. Click on "Methods Toolbox" and then on "Resources" and there is a list of resources on disability and impairment. The list includes many useful papers on disability and poverty

Making it work

HANDICAP INTERNATIONAL

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This website provides information about Making it Work (MIW), a global multi-stakeholder initiative to promote effective implementation of the Convention for the Right of Persons with Disabilities (CRPD). The initiative aims to collect and exchange examples of good practice and to use this to influence policy development in line with the CRPD. The MIW website highlights general information about the initiative and specific information about exisitng MIW projects and reports. It provides access to a series of user-friendly tools and resources to support practitioners working in the field of disability and development. The MIW Guidelines are available in downloadable pdf format in English, French and Spanish. A resource library is provided with links to CRPD-related information, disability and development topics and a news archive. This website is a useful tool for anyone working on disability rights issues

Good practice database

MAKING IT WORK

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This database contains individual good practice case studies that were collected using the Making it Work methodology. Making it Work is based on documenting examples of good practices and analyzing these practices to understand how they can be replicated or scaled up. The good practice case studies highlight what practice was achieved and how changes were achieved. Users can search for case studies by CRPD article, region, country, language, keyword or general search option

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