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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.

Rights passages from 'near death' to 'new life' : AIDS activism and treatment testimonies in South Africa

ROBINS, Steven
October 2005

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This paper investigates how the moral politics of AIDS activism in South Africa are contributing towards new forms of biological/health citizenship that are concerned with both rights-based struggles and creating collectively shared meanings of the extreme experiences of illness and stigmatisation of individuals living with AIDS. The paper argues that it is precisely the extremity of 'near death' experiences of full blown AIDS, and the profound stigma and 'social death' associated with the later stages of the disease that produce the conditions for AIDS survivors commitment to 'new life' and social activism. It is the activist mediation and re-telling of these traumatic experiences that facilitates AIDS activist commitment and grassroots mobilisation. It is the profound negativity of stigma and social death that animates the activist's construction of a new positive HIV-positive identity and understanding of what it means to be a citizen-activist and member of a social movement

A participatory approach in practice : understanding fieldworkers' use of participation rural appraisal in ActionAid The Gambia

HOLMES, Tim
June 2001

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This paper uses a case study to argue that participatory approaches emerge from a complex process of negotiation where fieldworkers are subject to unique combinations of competing influences from the organisations they work for, the communities they work with, and their own personal characteristics. It suggests that fieldworkers can actively pursue personal agendas and can also be involved in changing the structures that condition their actions. However, the paper concludes that elements of the organisational structure can leave little room for fieldworkers to use their agency positively, and that managers need to address this in order to reduce the gap between the policy and practice of participatory approaches

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