Knowledge, help-seeking and efficacy to find respite services: an exploratory study in help-seeking carers of people with dementia in the context of aged care reforms

Phillipson, L. and Johnson, K. and Cridland, E. and Hall, D. and Neville, C. and Fielding, E. and Hasan, H. (2019) Knowledge, help-seeking and efficacy to find respite services: an exploratory study in help-seeking carers of people with dementia in the context of aged care reforms. BMC Geriatrics , 19 (1 - Article 2).

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Abstract

Background: Research highlights the need for carers of people with dementia to acquire relevant and timely information to assist them to access appropriate respite services. Unfortunately, negative experiences of information-seeking can create additional stress for carers and contribute to delays in up-take, or not using respite services at all.

Methods: Cross-sectional survey data was collected from a convenience sample of n = 84 carers of older people with dementia living in the Illawarra-Shoalhaven region of NSW, Australia. We assessed knowledge, attitudes, information seeking behaviours, and unmet need for respite services in 2016, following national aged care reforms.

Results: Over the previous 12 months, 86% of carers sought respite service information. The majority (73%) of all carers reported an unmet need for respite services, and were relying on personal networks to provide support for respite information. Few utilised the new government gateway 'My Aged Care' phone line (11%) or website (25%). However, 35% used a pre-existing helpline to access short term or emergency respite. We found a preference for interpersonal information sources, including local doctor (65%), professionally and volunteer led carer support groups (49%), and family and friends (46%). Those using four or more information sources showed higher capacity to name local respite services. Respite service information seekers were more likely to be caring for someone with behavioural problems, to have received assistance to access services, and to have used respite services in the past 3 to 6 months.

Conclusions: New reforms in the Australian aged care sector have not adequately responded to the needs of carers of people with dementia for respite service information and support. Wider, community-based messaging promoting positive service options and the provision of active personal support is required to address the unmet need for respite in carers of people with dementia.


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Item Type: Article (Commonwealth Reporting Category C)
Refereed: Yes
Item Status: Live Archive
Additional Information: © The Author(s). 2019 Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.
Faculty/School / Institute/Centre: Current - Faculty of Health, Engineering and Sciences - School of Nursing and Midwifery (1 Jan 2015 -)
Faculty/School / Institute/Centre: Current - Faculty of Health, Engineering and Sciences - School of Nursing and Midwifery (1 Jan 2015 -)
Date Deposited: 16 Oct 2019 01:47
Last Modified: 14 Jan 2020 04:36
Uncontrolled Keywords: carers; caregivers; dementia; information seeking; respite; service use; system reform
Fields of Research : 11 Medical and Health Sciences > 1199 Other Medical and Health Sciences > 119999 Medical and Health Sciences not elsewhere classified
11 Medical and Health Sciences > 1117 Public Health and Health Services > 111702 Aged Health Care
11 Medical and Health Sciences > 1110 Nursing > 111001 Aged Care Nursing
Identification Number or DOI: 10.1186/s12877-018-1009-7
URI: http://eprints.usq.edu.au/id/eprint/35542

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