Obtaining meaningful informed consent: preliminary results of a study to develop visual informed consent forms with children

Research as intervention? Exploring the health and well-being of children and youth facing global adversity through participatory visual methods

“…(1) informed consent whereby researchers need to develop specific approaches that ensure children understand the benefit of participating voluntarily in research and that consent is informed and an ongoing process; (2) truth, interpretation, and representation which acknowledges that the arts-based research process uncovers multiple truths whereby children and youth become co-constructors of knowledge, and its interpretations, with adult-researchers; (3) dangerous emotional terrain, which asks us to consider the implications of portraying and/or embodying experiences, for both the child-participant and those watching, which are both critical to ensure participant safety; and (4) aesthetics, which raises questions of what is 'good research' (and who decides this) when you are dealing with artistic representation. We suggest that researchers should consider these elements when assessing the risks and benefits of children's and youth's participation and to develop specific ethical protocols and safeguards to ensure that participants understand the benefit of participating in research, that the participation is voluntary, and that the informed consent process (which can be presented visually to children and youth (see for example Ruiz-Casares & Thompson, 2014)) is ongoing.…”

Meaningful informed consent with young children: looking forward through an interactive narrative approach

“…A range of methods to present research information to children have been developed across different disciplines with varying levels of success. These have included written documents with simplified language (Sand, Eik-Nes, & Loge, 2012), information delivered using multimedia that can incorporate both sound and visual elements (Synnot, Ryan, Prictor, Fetherstonhaugh, & Parker, 2014), one-on-one researcher/child explanations (Flory & Emanuel, 2004), storyboards (Kumpunen, Shipway, Taylor, Aldiss, & Gibson, 2012), participatory visual methods (Ruiz-Casares & Thompson, 2014), and the use of cartoon images (Dockett et al, 2013). Results have indicated that, in general, the way children relate to ethics information is dependent on culture, context, and their perception of free choice; and that the form and content of the ethics information can affect the way children respond.…”

“…Storybooks with images enable children to learn about the real world, especially those aspects that they have not experienced directly (Woolley & Cox, 2007). Photographic images in narrative are particularly valuable as they support oral and written explanations, add depth to the child's understanding, promote discussion of complex concepts, depict ideas that are not easily articulated (Ruiz-Casares & Thompson, 2014), and stimulate children's visual thinking (Soundy & Drucker, 2010).…”

La ética relacional de seguridad cultural, derechos y deseo: reflexiones acerca de la realización de investigación con la participación de la comunidad en el caso de familias migrantes en Indonesia

“…Translated into simple Indonesian, the form described the project's purpose and the participants' rights, and used an innovative declaration page asking participants to indicate their understanding of and agreement to each part of the data collection and dissemination plan by circling an emoticon (smiling or frowning face) indicating "yes" or "no" and then signing their name. A similar approach has described in detail by Ruiz-Casares and Thompson (2016). The research ethics board requirement that participants also sign a receipt for their honorarium meant more fear-inducing paperwork.…”