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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.

Take us seriously! Engaging children with disabilities in decisions affecting their lives

LANSDOWNE, Gerison
et al
June 2013

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UNICEF’s work on disability is based on a human rights approach, with a focus on equity. It has been developed within the framework of inclusive development, and actively promotes the social model of disability. A central tenet is that legislation, policies and programmes must be informed and shaped by the children they will affect. Participation is a foundational principle of a rights-based approach. These guidelines are meant to strengthen the capacity of UNICEF and partners in creating opportunities for children with disabilities to exercise their right to be heard and taken seriously.

It is important to:

  • clearly identify obstacles impeding the participation of children with disabilities;
  • examine why participation is important for children with disabilities;
  • provide practical guidance on how and where to reach out and engage children with disabilities more effectively and systematically;
  • prioritize ways to measure the effectiveness of participatory initiatives with children with disabilities. 

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