Williams, Peter;
Shepherd, Elizabeth;
Sexton, Anna;
Lomas, Elizabeth;
(2023)
Working with care leavers and young people still in care: ethical issues in the co-development of a participatory recordkeeping app.
Archival Science
10.1007/s10502-023-09425-7.
(In press).
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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.
| Type: | Article |
|---|---|
| Title: | Working with care leavers and young people still in care: ethical issues in the co-development of a participatory recordkeeping app |
| Open access status: | An open access version is available from UCL Discovery |
| DOI: | 10.1007/s10502-023-09425-7 |
| Publisher version: | https://doi.org/10.1007/s10502-023-09425-7 |
| Language: | English |
| Additional information: | This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. |
| Keywords: | Ethics, Informed consent, Care-experienced, Participatory recordkeeping, Inclusive research |
| UCL classification: | UCL UCL > Provost and Vice Provost Offices > UCL SLASH UCL > Provost and Vice Provost Offices > UCL SLASH > Faculty of Arts and Humanities UCL > Provost and Vice Provost Offices > UCL SLASH > Faculty of Arts and Humanities > Dept of Information Studies |
| URI: | https://discovery.ucl.ac.uk/id/eprint/10178151 |
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