Protecting Children's Rights in the Collection of Health and Welfare Data

Abstract

Program managers and researchers promoting children's rights to health, education, and an adequate standard of living often gather data directly from children to assess their needs and develop responsive services. Gathering information within a participatory framework recognizing children's views contributes to protection of their rights. Extra precautions, however, are needed to protect children because of the vulnerabilities associated with their developmental needs. Using case studies of ethical challenges faced by program implementers and sociobehavioral researchers, this article explores ways in which data collection activities among children may affect their rights. We suggest ways in which rights-based principles may be used to derive safeguards to protect against unintentional harm and abuses, based on a multidisciplinary consultation with researchers and service providers.

Community interventions providing care and support to orphans and vulnerable children: a review of evaluation evidence

“…Children have a right to participation and expressing their own views concerning services provided to them, however, this must be balanced with their right to protection from any associated trauma or exploitation that could result from such exposure. Thus, children's research involvement requires designing age-appropriate informed consent processes and data collection methodologies (Schenk, Murove, & Williamson, 2006). While some of the reviewed studies did not fully document such procedures, others paid close and prominent attention to the ethical principles underlying children's participation (e.g.…”

“…Ethical difficulties include creating a control group not receiving the intervention in a resource-poor setting Á it is preferable to use a comparison group receiving the best available local services rather than a control group not receiving any services. Should the intervention prove beneficial, the comparison site must eventually have access to it (Connell, Turner, & Mason, 1985;Horizons et al, 2004;Schenk & Williamson, 2005;Schenk et al, 2006;Stimson & Power, 1992). Practical difficulties include randomising recipients within pre-set programme realities (Kippax & Van de Ven, 1998;Nutbeam, 1998) and preventing contamination between groups when interventions are social in nature (Kippax & Van de Ven, 1998;Torgerson, 2001).…”

"I never expected that it would happen, coming to ask me such questions": Ethical aspects of asking children about violence in resource poor settings

“…There have been several reviews and reports on ethical issues involved in conducting research with children in resource-poor settings [10]. These documents outline some related theory and recommendations [14], but to our knowledge, there is nothing written about the actual process used to address ethical challenges in a largescale survey or trial on violence against children in a low or middle income setting.…”

Children's participation in health research: from objects to agents?

“…Although participatory research is associated with ethical practice, in research where participants are disproportionately disadvantaged, it is not in itself a guarantee of removing the risk of further exploitation in the process of research. Schenk and colleagues (2006) point out that extra precautions are required to protect children and ensure safeguards are introduced so as to avoid placing too great a burden on them in the research process, or compromising either their safety or well‐being. Once again, perhaps inevitably, there is a time when the adult researcher takes back control – whether it be at the point of agreeing to work in a certain way, or when the research is written up for dissemination, or in having greater responsibility to ensure the children are protected and not placed in harm's way.…”