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Backhouse, Tamara 
ORCID: https://orcid.org/0000-0001-8194-4174, Jeon, Yun-Hee, Killett, Anne ORCID: https://orcid.org/0000-0003-4080-8365 and Mioshi, Eneida
(2022)
How do family carers and care-home staff manage refusals when assisting a person with advanced dementia with their personal care?
Dementia, 21 (8).
pp. 2458-2475.
ISSN 1471-3012
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Abstract
Background and objectives: Caregivers may encounter, or inadvertently cause, refusals of care by a care recipient. Managing refusals of care can be challenging and have potential negative consequences. We aimed to examine caregivers’ (care-home staff and family carers) experiences of managing refusals of personal care in advanced dementia. Research design and methods: One-to-one semi-structured interviews with 12 care assistants from six care homes and 20 family carers who were physically assisting a person with advanced dementia with their personal care in the UK. Interviews were audio recorded and transcribed verbatim, with data analysed using qualitative content analysis. Findings: Core to the caregiver experience of refusals of care was knowing the person. This underpinned five key themes identified as caregivers’ strategies used in preventing or managing refusals of care: (1) finding the right moment to care; (2) using specific communication strategies; (3) being tactful: simplifying, leaving, or adapting care; (4) having confidence in care; and (5) seeking support from others when safety is at risk. Discussion and implications: Different caregiver relationships with the person with dementia influenced how they managed refusals of care. Refusals of care can place caregivers in tough situations with tensions between providing care when it is seemingly not wanted and leaving care incomplete. Both caregiver groups require support such as coaching, mentoring and/or advice from other health and social care practitioners to manage difficult personal care interactions before crisis points occur.
| Item Type: | Article |
|---|---|
| Additional Information: | Funding: This work was supported by a fellowship award from The Alzheimer’s Society, UK (Grant Number: 372 AS-JF-17-002). Authors TB, EM and AK are supported by the National Institute for Health Research Applied Research Collaboration East of England (ARC EoE). The views expressed are those of the authors and not necessarily those of the Alzheimer’s Society, National Institute for Health Research or the University of East Anglia. |
| Uncontrolled Keywords: | activities of daily living,rejection,resistance-to-care,social care,sociology and political science,social sciences(all) ,/dk/atira/pure/subjectarea/asjc/3300/3312 |
| Faculty \ School: | Faculty of Medicine and Health Sciences > School of Health Sciences |
| UEA Research Groups: | Faculty of Medicine and Health Sciences > Research Groups > Dementia & Complexity in Later Life Faculty of Medicine and Health Sciences > Research Centres > Norwich Institute for Healthy Aging Faculty of Medicine and Health Sciences > Research Centres > Lifespan Health |
| Related URLs: | |
| Depositing User: | LivePure Connector |
| Date Deposited: | 01 Aug 2022 09:30 |
| Last Modified: | 19 Oct 2023 03:23 |
| URI: | https://ueaeprints.uea.ac.uk/id/eprint/87010 |
| DOI: | 10.1177/14713012221123578 |
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