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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.

Guatemala National Disability Study ENDIS 2016 Report

DONICIO Carlos
GRECH Shaun
Islay MACTAGGART
Jonathan NABER
Dr Ana Rafaela SALAZAR DE BARRIOS
Gonna ROTA,
Sarah POLLACK
April 2017

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The Guatemala National Disability Study (ENDIS 2016) was undertaken to address a need for up to date reliable data on disability in Guatemala.

Through a population based survey:

* To estimate the national disability prevalence among adults and children in Guatemala, and to provide regional estimates for 5 broad regions

* To disaggregate the prevalence of disability in Guatemala by age, sex, type of functional limitation and socio-economic status

* To explore the impact of disability on: poverty, quality of life, participation, health and opportunities to go to school and to work amongst children and adults respectively

Through a qualitative study:

* To explore cultural, ideological, and social interpretations and responses to disability; provide insight into the disability and poverty relationship; and examine social, political, and economic dimensions operating within this relationship.

For every child, a fair chance : the promise of equity

UNITED NATIONS CHILDREN’S FUND (UNICEF)
November 2015

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“UNICEF’s commitment to equity – giving a fair chance in life to every child, everywhere, especially the most disadvantaged – is built on the conviction that it is right in principle and evidence that it is right in practice. This report makes the case for closing persistent gaps in equity…” The report identifies a number of persistent gaps in equity for children, ranging from health to nutrition, to social inclusion. The report concludes by making recommendations to close gaps in equity worldwide as well as projecting progress in achieving equity by 2030

Global Out-of-School Children initiative operational manual

UNICEF
UNESCO INSTITUE FOR STATISTICS
May 2015

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The Out-of-School Children Initiative (OOSCI) aims to support countries in their study and analysis of out-of-school children and children who are at risk of dropping out by using innovative statistical methods to develop comprehensive profiles of excluded children, linking these profiles to the barriers that lead to exclusion, and identifying, promoting and implementing sound policies that address exclusion often from a multi-sectoral perspective. The manual aims to provide concise and powerful tools for achieving this goal. 

OOSCI studies are intended to stimulate policy changes and enable governments to target their strategies for reaching out-of-school children. By using a systematic approach to identifying out-of-school children and analysing the associated issues, the studies can guide education sector reforms that will help bring all children into school.

 

 

The state of the world's children 2014 in numbers : every child counts

UNITED NATIONS CHILDREN’S FUND (UNICEF)
January 2014

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This report highlights the critical role data and monitoring play in realising children’s rights. It presents an updated compendium of statistics and data (which has been produced thirty years after the initial report) relating to the position of children throughout the world but particularly within the Global South. The data indicators cover a vast range: from demography, health and education, to rate of progression, child mortality, and disparities by household wealth. It emphasises that credible data, disseminated effectively and used correctly, make change possible to target interventions that help right the wrong of exclusion by identifying needs, supporting advocacy, gauging progress and holding duty bearers to account

Child disciplinary practices at home : evidence from a range of low- and middle-income countries

UNITED NATIONS CHILDREN’S FUND (UNICEF)
2010

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This report analyses findings on child discipline from 35 Multiple Indicator Cluster Surveys (MICS) and Demographic and Health Surveys (DHS) conducted in low and middle-income countries in 2005 and 2006. Questions on child discipline were addressed to the mother (or primary caregiver) of one randomly selected child aged 2-14 years in each household. The questionnaire asked whether any member of the household had used various disciplinary practices with that child during the past month. The survey covered eight violent disciplinary practices, some of which were psychological (such as shouting and name calling) while others were physical (such as shaking and hitting). The surveys also collected information on three nonviolent forms of discipline, such as explaining why a behaviour is wrong. Finally, interviewers asked the mother (or primary caregiver) about her or his personal beliefs regarding the need for physical punishment in child rearing"

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