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Summary: 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.

Findings: 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.

Applications: 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.

Sweden, as a welfare state, has a long tradition of providing formal home care and support to their citizens in their own homes, either through home care services or personal assistance. A large percentage of frail elderly and persons with disability who receive formal home care require personal and intimate care, such as help with eating, showering, getting dressed and personal hygiene. Managing intimacy and safeguarding the care recipient’s integrity pose particular challenges for staff. The aim of this qualitative interview study is to describe and analyse care workers’ (CWs) and personal assistants’ (PAs) strategies for managing situations and challenges related to provision of personal and intimate care in the context of formal home care. Semi-structured interviews with eleven CWs and nine PAs were conducted. Our analysis reveals a complex repertoire of relational and communicative strategies, within an overall approach - which we labelled 'empathetic attuning'—of relating to the current situation and task at hand whilst safeguarding integrity. These strategies were intertwined with dimensions of time. The possibility to accomplish satisfactory personal and intimate care rests on structural and organisational conditions that promote sustainable working conditions, where relations characterised by continuity, integrity and respect can be realised.

Sweden has a long tradition of providing social care and support to its citizens in their own homes through formal home care, delivered either by home care services or personal assistance. A majority of people given support by formal home care need assistance with personal and intimate care. The focus of this interview study was on exploring care recipients’, care workers’, personal assistants’ and care unit managers’ perceptions and experiences of intimate and personal care in the context of formal home care in Sweden. In total, 57 interviews were conducted with 42 persons. Three themes emerged in the analysis: Personal Hygiene, Personal Sphere, and The Contextual Variability of Intimacy. Interviewees described intimate care as being inseparable from a person’s service needs as a whole. Highlighted was how caring for and washing intimate body parts, intrusion into recipients’ personal spheres, and the need to preserve integrity vary depending on situational, temporal and relational aspects. To safeguard the care recipient’s influence, integrity and dignity in the reception/provision of care work, home care services and personal assistance, it is important to raise awareness of the variation in perceptions of intimate and personal care in education and inhouse training.

I Sverige får ett stort antal sköra äldre och personer med funktionsnedsättning omsorg i hemmet, i form av hemtjänst och/eller personlig assistans. För majoriteten av omsorgsmottagare utgör personlig och intim omsorg både ett centralt och vardagligt inslag i verksamheterna. Fokus för denna intervjustudie var att undersöka omsorgsmottagares, omsorgspersonals och enhetschefers uppfattning om och erfarenheter av personlig och intim omsorg i hemtjänst och personlig assistans. Totalt genomfördes 57 intervjuer med 42 personer. Tre övergripande teman framkom i analysen; personlig hygien, personlig sfär och kontextuell variation av intimitet. Intervjupersonerna beskriver personlig och intim omsorg som något som inte går att separera från behovet av omsorg som helhet. Analysen visar hur intim omsorg och överträdelser av omsorgsmottagarens personliga sfär, samt behovet av att trygga omsorgsmottagarens integritet, varierar beroende på situationella, temporala och relationella aspekter. För att säkra omsorgstagares inflytande, integritet och värdighet i samband med omsorgsarbete, är det viktigt att i utbildning och inskolning skapa en ökad medvetenhet om olikheter och variationer i uppfattningar av vad som räknas som personligt och intimt i hemtjänst och personlig assistans.

Starting from the connection and tension between the expression and the acknowledgement of pain, we explore the interpersonal space between the two: How it is that pain’s expression and acknowledgement are always inflected by the space between the one in pain and the other, and how, in turn, pain’s expression and acknowledgement inflect that space. To inflect, grammatically, is to mark words-by gender, number, tense, mood, indicating a constitutive difference: our words are always inflected somehow or other. In this sense, the expression or suppression of pain, its being acknowledged or ignored, marks interpersonal space and is marked by it. Through some examples, we raise questions about what we learn about interpersonal space-when that space inflects and is inflected by pain. We are especially interested in the absence of expression and/or acknowledgement, in the ignoring of pain and the constraints on acknowledgement. Examples that will be discussed are: Ignoring pain, love-making, and intimate space: We want to think about minor, incidental (non-eroticised) pain-that typically carries with it a determination not to express the pain, in order to avoid the distraction of its being acknowledged-the disruption of the space of intimacy. Inflicting pain, professional caring, and professional space: Again, we focus on the (relatively) mundane and morally unproblematic-the pain inflicted, e.g., by a doctor’s cleaning a wound or by a physiotherapist initiating motion in an injured limb. The interpersonal space is one of professional engagement, and both pain’s expression and its acknowledgement are and should be contextualised by expectations of appropriate care. Witnessing pain, face-to-face: Either professionally or by chance, one may become a witness to the newly bereaved. A risk here is an acknowledgement that collapses the interpersonal space where the pain calls for presence at a distance, respecting the aura of emptiness.

Starting from the connection and tension between the expression and the acknowledgement of pain, we explore the interpersonal space between the two: How it is that pain's expression and acknowledgement are always inflected by the space between the one in pain and the other, and how, in turn, pain's expression and acknowledgement inflect that space. To inflect, grammatically, is to mark words—by gender, number, tense, mood—indicating a constitutive difference: our words are always inflected somehow or other. In this sense, the expression or suppression of pain, its being acknowledged or ignored, marks interpersonal space and is marked by it. Through some examples, we raise questions about what we learn about interpersonal space—when that space inflects and is inflected by pain. We are especially interested in the absence of expression and/or acknowledgement, in the ignoring of pain and the constraints on acknowledgement. Examples that will be discussed are: I) ignoring pain, love-making and intimate space, ii) inflicting pain, professional caring, and professional space, iii) witnessing pain face-to-face, and finally iv) witnessing pain at a distance.