Routines of isolation? A qualitative study of informal caregiving in the context of glioma in Australia.
Informal caregiving for a person living with glioma can be both rewarding and multidimensionally challenging, given the potential for debilitating symptoms, cognitive impairment or personality changes, as early as diagnosis. There is growing evidence that, due to the demands of care, experiences and...
| Publicado en: | Health & Social Care in the Community Vol. 30; no. 5; pp. 1924 - 1933 |
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| Autores principales: | , , |
| Formato: | research tables/charts Journal Article |
| Publicado: |
Wiley-Blackwell
Sep2022
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| Acceso en línea: | Ver este registro en EBSCOhost |
| fields | @attributes: recordID: 1 pdfLink: plink: https://search.ebscohost.com/login.aspx?direct=true&db=ccm&AN=158480001&site=ehost-live header: @attributes: shortDbName: ccm uiTerm: 158480001 longDbName: CINAHL Complete uiTag: AN controlInfo: bkinfo: dissinfo: jinfo: jid: 09660410 EVX jtl: Health & Social Care in the Community issn: 09660410 maglogo: Y pubinfo: dt: Sep2022 vid: 30 iid: 5 pid: 480 pub: Wiley-Blackwell place: Malden, Massachusetts artinfo: ui: 158480001 152454831 158480001 158480001 10.1111/hsc.13571 158480001 ppf: 1924 ppct: 9 formats: fmt: – @attributes: type: T – @attributes: type: P tig: atl: Routines of isolation? A qualitative study of informal caregiving in the context of glioma in Australia. aug: au: Kirby, Emma van Toorn, Georgia Lwin, Zarnie affil: Centre for Social Research in Health, University of New South Wales, Sydney New South Wales,, Australia sug: subj: Glioma Diagnosis Home Health Care Caregivers Psychosocial Factors Life Experiences Social Isolation Loneliness Human Qualitative Studies Australia Study Design Semi-Structured Interview Interviews Purposive Sample Thematic Analysis Conceptual Framework Software Checklists Male Female Descriptive Statistics Adolescence Adult Middle Age Aged Aged, 80 and Over Interpersonal Relations Social Mobility Long Term Care Emotions Caregiver Burden Cognition Disorders Intimacy Comparative Studies Knowledge Empathy Psychological Well-Being Adolescent: 13-18 years Adult: 19-44 years Middle Aged: 45-64 years Aged: 65+ years Aged, 80 & over Male Female ab: Informal caregiving for a person living with glioma can be both rewarding and multidimensionally challenging, given the potential for debilitating symptoms, cognitive impairment or personality changes, as early as diagnosis. There is growing evidence that, due to the demands of care, experiences and feelings of loneliness and isolation among informal caregivers are widespread, and opportunities for quality or meaningful social connectedness are lacking. While considerable research has quantified the causes and effects of loneliness and isolation in informal care contexts, the lived experience of loneliness has received relatively little attention. The aim of this study was to better understand the everyday experiences of a group of home‐based informal caregivers of people living with glioma in Queensland, Australia. Drawing on in‐depth interviews with 32 informal caregivers, purposively sampled, and recruited through a tertiary hospital, in this paper, we explore how the various experiences, demands, and social and relational dynamics in/of informal care (re)produce forms of isolation and loneliness. Using the framework approach to thematic analysis, we derived four themes: (a) the 'need' to be near the care recipient, and the implications for caregiver mobility; (b) the strong sense of responsibility for care, and the virtues of 'good' caring; (c) experiences of loneliness in the company of others and (d) postponement of social connection and minimising the self. The findings, we argue, are reflective of broader social and moral norms and expectations within experiences of home‐based informal care. pubtype: Academic Journal doctype: research tables/charts Journal Article ougenre: Article language: English refInfo: holdings: @attributes: islocal: N |
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