Barnes, S. orcid.org/0000-0003-3279-6368 and Whittingham, K. (2020) Informal carers' experiences of caring for a person with heart failure in a community setting. Health and Social Care in the Community, 28 (3). pp. 883-890. ISSN 0966-0410
Abstract
Heart failure (HF) is a life limiting condition with a poor prognosis and unpredictable disease trajectory. HF brings physical and emotional challenges for patients and their carers. Predominantly the informal carer population consists of older females, however, caring is evolving as longevity increases and complex conditions are become more commonplace. Consequently, more men and younger people are contributing to daily care. The aim of this study was to explore the positive as well as negative dimensions of caring in HF across a range of carer characteristics Fourteen semi-structured interviews were conducted with informal carers of people with HF in the UK (median age 71; female 10). Interviews were transcribed verbatim and analysed with the assistance of NVivo10 using Interpretative Phenomenological Analysis. Findings from the study demonstrated that most participants considered caring as integral to their relationships. Dimensions facilitating positivity in caring included compassion, thoughtfulness and understanding. An ability to cope was influenced by a range of attributes including quality of relationships in the carer/patient dyad and with formal social care providers who offered access to tailored and timely information and support. The unpredictable HF disease trajectory influenced the carer experience and enhanced the challenges encountered. The information needs of carers were not always adequately met and younger adult carers expressed particular difficulties with appropriate information and support. Expectations of our informal carer population are increasing and evolving. Health and social care policy requires innovative proposals for the funding and delivery of health and social care that has the contribution made by informal carers at its core.
Metadata
Item Type: | Article |
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Authors/Creators: |
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Copyright, Publisher and Additional Information: | © 2020 John Wiley & Sons Ltd. This is an author-produced version of a paper subsequently published in Health and Social Care in the Community. Uploaded in accordance with the publisher's self-archiving policy. |
Keywords: | Carers; heart failure; social care; unpredictability; coping |
Dates: |
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Institution: | The University of Sheffield |
Academic Units: | The University of Sheffield > Faculty of Medicine, Dentistry and Health (Sheffield) > School of Health and Related Research (Sheffield) > ScHARR - Sheffield Centre for Health and Related Research |
Depositing User: | Symplectic Sheffield |
Date Deposited: | 28 Nov 2019 13:31 |
Last Modified: | 12 Nov 2021 09:33 |
Status: | Published |
Publisher: | Wiley |
Refereed: | Yes |
Identification Number: | 10.1111/hsc.12919 |
Open Archives Initiative ID (OAI ID): | oai:eprints.whiterose.ac.uk:153997 |