Listening, learning, caring: exploring assemblages of, ethics of and pathways to care for avoidant restrictive food intake disorder (ARFID)

Abstract

Care has been theorised in relationship to eating disorders as a central consideration across diagnoses. In the context of avoidant restrictive food intake disorder (ARFID) specifically, there is room to further develop the nuances around layers of care involved in working towards well-being. In this paper, we engage with the stories of 14 caregivers of people with ARFID, exploring their pathways to care (or lack thereof) through the healthcare system in Aotearoa New Zealand. We explore the material, affective and relational aspects of care and care-seeking, engaging with the power and politics of care as it flows through care-seeking assemblages. Using postqualitative methods of analysis, we discuss how while participants were seeking care, they received (or, at times, did not receive)treatment, and unpack how care and treatment are not always synonymous. We work up extracts from parents’ stories surrounding their caring for their children and how their actions were, at times, interpreted in ways that made them feel blame and shame rather than care. Participants’ stories also offer glimmers of care within a resource-strapped healthcare system, which invite us to consider the potentiality of a relational ethics of care as an assemblage-shifting moment.