Care recipients’ management of and approaches to receiving personal and intimate care

Abstract

An interview study was conducted with persons receiving home care services and personal assistance in Sweden (13 individuals, 25 interviews) with the aim to analyze their experiences of managing personal and intimate care. The analytical approach was guided by phenomenologically informed research and Erving Goffman's theoretical work on self-presentation and social life as it differs in frontstage and backstage settings. A reflected approach to the complex challenges associated with becoming and being a person in need of personal and intimate care was revealed. This involved continuous adaptations and attuning to organizational and relational conditions of formal home care. Being a recipient of personal and intimate care does not mean being passive. It entails relating to and sustaining the care relation, where even choosing to accept suboptimal conditions is an act of agency. The recipients’ private homes were hybridized, transformed both into a waiting room, with the recipient on standby and into a workplace. The homes thus partly lost their character as a backstage realm where one could avoid the gaze of others. This also led to a hybridization of the personal sphere, in the form of marginal scope for true privacy, necessitating strategies for protecting one's own space. It is important both to acknowledge the intrusive nature of personal and intimate care, which results in extensive hybridization of the home and personal sphere and to recognize care recipients’ agency in the relationship that care establishes.