Working with care leavers and young people still in care: ethical issues in the co-development of a participatory recordkeeping app

Abstract

An important element of social research is the ethical treatment of research participants. This paper outlines the ethical issues pertaining to a study (MIRRA: Memory-Identity-Rights in Records-Access) that developed a ‘participatory recordkeeping system specification’ for young people in care. The research team worked with members of the cohort themselves (aged 13–17 years) and care-experienced adults. It discusses in general terms the various elements that require ethical consideration, such as informed consent, anonymity, avoiding harm, and needing to benefit the participants and their peers. It goes on to describe how such issues were approached by the team. The particular ethical measures required for the young and ‘cared-for’ participants are explored. These included the need to work through, first, an adult gatekeeper—a representative of each care organisation approached—and then, within the organisation, a social worker or care-giver. This greatly limited recruitment, as these adults often vetoed contact with the young people themselves. A checklist is outlined, derived from the ‘Gillick Test of Competence’ to assess capacity to give ‘informed consent’, for willing gatekeepers/carers to consider. The article then addresses how the Participant Information Sheets were developed for the young cohort, emphasising the need to do this by consulting appropriate professionals, published guidelines and the potential participants themselves. After considering the possible risks and benefits to participants, the paper concludes by suggesting that ethical issues around recruitment and participation of this cohort are complex and require much additional bureaucracy, patience and flexibility—but can be immensely rewarding.