Author:

Keywords:

Arts & Humanities, Art, Research ethics, Children and youth, Cancer care environments, Participatory video research, Reflectivity, EVERYDAY ETHICS, SOCIAL-RESEARCH, VISUAL RESEARCH, HEALTH, PERSPECTIVES, ISSUES, FIELDWORK, PROJECT, CONSENT, WORK, Ethics, Cancer Care Facilities, research ethics, children and youth, cancer care environment, participatory video research, reflectivity, 0806 Information Systems, 1201 Architecture, 1203 Design Practice and Management, 3301 Architecture, 3303 Design

Abstract:

Since the turn of the century we see a renewed interest in the impact of hospital environments on children’s well-being. With policy largely built around adult assumptions, knowledge about these environments from young people’s perspectives is limited. Participatory visual research is considered helpful to explore people’s perspectives in other than solely verbal ways. Conducting it with children in sensitive and hard-to-enter contexts like hospital wards, however, poses important ethical questions. Discussions tend to contrast procedural ethics with ethics in the field, showing how the former are unfitted for this kind of research. This paper takes a more constructive approach by reflecting on what we can learn from these ethical encounters while preparing and conducting a pilot study. We argue that exploring, rather than closing, the experienced gap between design research and healthcare ethical protocols establishes a shared space of reflection that offers a stepping stone to link both.