Conversations between procedural and situated ethics: Learning from video research with children in a cancer care ward

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.

Negotiating Ethics-in-Action in a Long-term Research Relationship with a Young Child

“…For this article, inspired by the discussions in “Arena Ethics” (Hilppö et al, 2019 ), we returned to these experiences, reflections, and interpretations raised and written down during the years and observed them again, with an intention to identify from the field notes and reflections particular turning points that changed something in our approach. Thus, as a selection criterion for this study, we chose to focus on the events and incidents that “surprised the researcher” (see Halquist & Musanti, 2010 ) and, because they were “unpredictable” and “messy” (Tutenel et al, 2019 ), caused some ethical tension that led the whole research team to reflect on ethics-in-action in our situation with the study’s focus child. A common feature of these events and incidents was that they involved a challenge or contradiction to a planned or predicted occurrence during data collection.…”

“…Researchers face a challenge to verbalize the actual research process in advance during consent processes and pre-evaluations. However, this detailed planning is not easily negotiated with certain approaches, such as ethnographic methods and long-term engagement with subjects, which always involve unpredictability (see also Tutenel et al, 2019 ). With older children, who are given a possibility to express written consent, some formal procedures may also pose challenges in reciprocity and mutual understanding (see examples from Kaukko et al, 2019 ; Ruiz-Casares & Thompson, 2016 ).…”

“…Relational ethics refers to actual ethical situations that researchers encounter while conducting fieldwork (Ellis, 2007 ). Relational ethics, in this article, include ideas on (a) the dynamics, unpredictability, and messiness of ethical questions; (b) moral interdependency between researchers and research participants; and (c) understanding that ethical decisions are always socially and spatially situated in a context (Tutenel et al, 2019 ). In relational ethics, as summarized by Hilppö et al ( 2019 , 408), “primacy is placed on the relationship between persons and on their constitutive interdependency as the ground for ethical decision-making.” Thus, relational ethical thinking provides space for new and even surprising ethical issues that arise in current research situations.…”

VIFECO: An Open-Source Software for Counting Features on a Video

“…In social sciences, they are typically used in visual anthropology [1,2] and geography [3,4] for collecting a broad range of data in the field. Indeed, videos recorded by digital action cameras (DACs) can enhance analyses based on innovative methodologies such as mobile methods [5,6], participatory visual research [7][8][9], or non-participatory observation studies [10,11]. They are also many applications of DACs in transportation studies [12][13][14][15], environmental sciences [16,17], and organizational research [18,19].…”

Understanding children's spatiality in cancer care environments: Untangling everyday practices around an IV-stand in a paediatric day-care ward

“…The modernist building is the result of a joint venture between a Belgian and a UK architecture firm. One of the UK architects was involved in the seminal study 'Children in hospital: Studies in planning' (Nuffield Foundation, 1963 (Pink, 2013;Tutenel et al, 2019). For this article we return to the unedited images as raw data -well aware, however, that raw data are always already cooked (Packer, 2011): rather than as something 'out there', waiting to be collected, analysed and represented from a distance, we understand data as constituted by what we are researching.…”