Reflections on ethical dilemmas in working with so-called ‘vulnerable’ and ‘hard-to-reach’ groups: experiences from the Foodways and Futures project

A Narrative Review of Ethical Issues in Participatory Research with Young People

“…As YPAR projects aim to include youth as equal participants, the consent process may be muddled as researchers move away from a protectionist viewpoint to working as cooperative partners (Balakrishnan & Cornforth, 2013;Khanlou & Peter, 2005). While most articles in the review refer to consent, eight articles specifically contend that the consent process needs to be iterative and ongoing with researchers being continuously reflexive and checking in with participants' understanding frequently (Balakrishnan & Cornforth, 2013;Fargas-Malet et al, 2010;Gombert, Douglas, McArdle, & Carlisle, 2016;Houghton, 2015;Kia-Keating et al, 2017;Khanlou & Peter, 2005;Petrie et al, 2006;Ritterbusch, 2012). In this vein, it is important that the youth participants understand not only the research project but also the nature of ongoing consent; consent and decisions about involvement needs to be an ongoing process rather than a one-time agreement at the beginning of a study (Petrie et al, 2006;Ritterbusch, 2012).…”

“…In some instances, anonymity has been critiqued as it can hamper the ability of young people to take credit for their work. Gombert et al (2016) indicate the potential issues with required anonymity, though they do not problematize or advocate against blanket anonymity. On the other hand, young people in Yanar et al's (2016) research question how to claim their work and effect change if they are not able to be acknowledged by name.…”

“…Smith et al (2002) similarly note remuneration, including transportation and childcare costs for the young parents in their study, as a requirement to acknowledge and value them. Monetary payment is not always possible within research studies, nonetheless Gombert et al (2016) state that researchers need to create opportunities as a means of remuneration for participants, including: public speaking and presenting, building their resumes, and other worthwhile activities as negotiated with participants. This, however, becomes increasingly difficult when IRBs or parents require anonymity of young people.…”

Talking About Food Choices of Former Homeless Young People: Making Sense of Conflicting Discourses of Blame Through Social Worlds Theory

“…In fact, whilst I found elements of blame discourses as described above, many members of staff were also cautious and hesitant in how they expressed their observations of the young people's food choices: Such discourse of being cautious adds yet another dimension to the above discourses of blame and shows even more nuanced the ways in which participants aimed to express themselves. The dilemmas between naming and blaming were also experienced by myself as researcher in the project (Gombert et al, 2015).…”

“…Furthermore, action research methods including photovoice were key to the project, but those are discussed elsewhere (e.g. Gombert et al, 2015;Gombert et al, 2017).…”