Ethical issues in the use of video observations with people with advanced dementia and their caregivers in nursing home environments

Abstract

The use of video allows researchers to gather rich, evocative and contextualized data, yet it also opens a space fraught with ethical challenges. In this paper, the authors describe their use of video methods in ethnographic case study research examining the experiences of persons with advanced dementia who reside in nursing homes and are nearing the end-of-life. In this research, video is used to help garner a deeper understanding of the person with advanced dementia’s being-in-the-world as well as the embodied workplace practices of care staff. Drawing upon notions of emplacement and embodiment, we unpack ethical issues that arise from conducting research with a vulnerable population within a complex environment. In addition to discussing general ethical principles such as consent, assent and privacy, we argue that to conduct ethically sound research, the researcher needs a solid understanding of the complex and dynamic nature of the nursing home environment. This is, at once, a communal living setting and a home for the residents, a place of work for a diverse group of care staff, and an organizational structure emplaced in a larger socio-political environment. We shed light on, and discuss potential solutions to, the challenges and complexities of bringing a video camera into the nursing home space where ethical questions arise in ambiguous situations, where relationships shift and the ethical ground reconfigures over time.