Re-examining ethical challenges of using ethnography to understand decision-making in family caregiving networks of children with feeding tubes

Abstract

ABSTRACT Researching the experiences of children reliant on family caregivers is methodologically and ethically challenging. Conducting feminist digital ethnography within this context requires rethinking established feminist methods, including problematizing the assumptions of autonomy and individualism that undergird notions of decision making. In this paper, I explore ethical decision-making within the context of multi-voice care teams for children with feeding tubes who require long-term care. Within geography, my work builds on previous discussions of ethics and feminist methodology by examining the tensions between the emancipatory goals of feminist scholarship and the operationalization of those goals within marginalized populations like children and youth dependent on medical technology.