Hours of Care and Caring Tasks Performed by Australian Carers of Adults with Mental Illness: Results from an Online Survey
The aim of this study was to provide a detailed profile of the hours of care Australian mental health carers provide for different types of caring tasks. The UQ Carer Survey 2016 was administered online to 105 adults caring for someone aged 16 years or older whose main condition is mental illness. Mental health carers reported providing on average 37.2 h of care per week to their main care recipient. Carers spent most of their active caring time providing emotional support, and the least of their time assisting with activities of daily living. Carers highlighted that this care time fluctuates with the undulating nature of mental illness, and many noted additional hours devoted to being ‘on call’ in case of emergency. Carers provide large amounts of support on a long-term and often unpredictable basis. Government services need to match the undulating nature of the illness by providing more flexible support options for mental health carers.
KeywordsCarers Caregivers Mental health Mental illness Australia
The authors thank members of the reference group established by Mind Australia who provided advice and guidance on this work: Frances Sanders, Margaret Grigg, Philip Norman and Gerry Naughtin. The authors acknowledge the contribution of the mental health carers who participated in the UQ Carer Survey 2016 and the carer organisations who facilitated the recruitment of participants.
This research was funded by Mind Australia under the Mind Carer Development Fund as part of a broader project to estimate the replacement cost of mental health carers.
Compliance with Ethical Standards
Conflict of interest
The authors declare that they have no conflict of interest.
All procedures performed in studies involving human participants were in accordance with the ethical standards of The University of Queensland Behavioural & Social Sciences Ethical Review Committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.
- Aranda-Reneo, I., Oliva-Moreno, J., Vilaplana-Prieto, C., Hidalgo-Vega, A., & Gonzalez-Dominguez, A. (2013). Informal care of patients with schizophrenia. The Journal of Mental Health Policy and Economics, 16, 99–108.Google Scholar
- Australian Bureau of Statistics. (2007). National survey of mental health and wellbeing: Summary of results (No. 4326.0). Retrieved from http://www.abs.gov.au/ausstats/abs@.nsf/mf/4326.0.
- Australian Bureau of Statistics. (2008). A profile of carers in Australia, 2008 (No. 4448.0). Retrieved from http://www.abs.gov.au/AUSSTATS/abs@.nsf/DetailsPage/4448.02008?OpenDocument.
- Australian Bureau of Statistics. (2012). Caring in the community, Australia, 2009 (No. 4436.0). Retrieved from http://www.abs.gov.au/AUSSTATS/abs@.nsf/Lookup/4436.0Main+Features12009?OpenDocument.
- Australian Bureau of Statistics. (2013). Disability, ageing and carers, Australia: Summary of findings, 2012 (No. 4430.0). Retrieved from http://www.abs.gov.au/AUSSTATS/abs@.nsf/DetailsPage/4430.02012.
- Australian Institute of Health and Welfare. (2004). Carers in Australia: Assisting frail older people and people with a disability (No. AGE 41). Retrieved from http://www.aihw.gov.au/publication-detail/?id=6442467651.
- Carers Victoria. (2013). Invisible care: Access to carer payment and carer allowance by Victorian carers of a person with a mental illness. Retrieved from http://www.carersvictoria.org.au/Assets/Files/Carers%20Victoria_Invisible_Care_Report_2013.pdf.
- Department of Human Services. (2016). Eligibility for carer payment. Retrieved from https://www.humanservices.gov.au/customer/enablers/eligibility-carer-payment.
- Department of Social Services. (2016). Designing a new integrated carer support service: A draft concept for the delivery of interventions to improve outcomes for carers. Retrieved from http://www.engage.dss.gov.au/wp-content/uploads/2016/04/Draft-Service-Concept-3.pdf.
- Gaugler, J. E., Jarrott, S. E., Zarit, S. H., Stephens, M. A., Townsend, A., & Greene, R. (2003). Adult day service use and reductions in caregiving hours: Effects on stress and psychological well-being for dementia caregivers. International Journal of Geriatric Psychiatry, 18(1), 55–62. https://doi.org/10.1002/gps.772.CrossRefGoogle Scholar
- Grover, S., Chakrabarti, S., Ghormode, D., Dutt, A., Kate, N., & Kulhara, P. (2014). Clinicians’ versus caregivers’ ratings of burden in patients with schizophrenia and bipolar disorder. International Journal of Social Psychiatry, 60(4), 330–336. https://doi.org/10.1177/0020764013488708.CrossRefGoogle Scholar
- Haro, J. M., Kahle-Wrobleski, K., Bruno, G., Belger, M., Dell’Agnello, G., Dodel, R.,… Argimon, J. M. (2014). Analysis of burden in caregivers of people with alzheimer’s disease using self-report and supervision hours. The Journal of Nutrition, Health & Aging, 18(7), 678–684. https://doi.org/10.1007/s12603-014-0036-0.CrossRefGoogle Scholar
- Harris, M., Diminic, S., Marshall, C., Stockings, E., & Degenhardt, L. (2015). Estimating service demand for respite care among informal carers of people with psychological disabilities in Australia. Australian and New Zealand Journal of Public Health, 39(3), 284–292. https://doi.org/10.1111/1753-6405.12337.CrossRefGoogle Scholar
- Hassink, W. H., & Van den Berg, B. (2011). Time-bound opportunity costs of informal care: Consequences for access to professional care, caregiver support, and labour supply estimates. Social Science & Medicine, 73(10), 1508–1516. https://doi.org/10.1016/j.socscimed.2011.08.027.CrossRefGoogle Scholar
- IBM Corp. (2013). IBM SPSS statistics for windows, Version 22.0. Armonk, NY: IBM Corp.Google Scholar
- Mangalore, R., & Knapp, M. (2007). Cost of schizophrenia in England. The Journal of Mental Health Policy and Economics, 109, 23–41.Google Scholar
- Martín, J., Padierna, A., van Wijngaarden, B., Aguirre, U., Anton, A., Muñoz, P., & Quintana, J. M. (2015). Caregivers consequences of care among patients with eating disorders, depression or schizophrenia. BMC Psychiatry, 15(1), 1–10. https://doi.org/10.1186/s12888-015-0507-9.
- Mental Health Council of Australia. (2000). Carers of people with mental illness project: Final report. Retrieved from http://www.supportingfamilies.org.nz/Libraries/Documents/Carers_Of_People_With_Mental_Illness_Project.sflb.ashx.
- Mental Health Council of Australia. (2010). Mental health carers report 2010. Retrieved from http://www.carersact.org.au/Assets/Files/mental-health-carers-report_2010-11.pdf.
- Mental Health Council of Australia. (2012). Recognition and respect: Mental health carers report 2012. Retrieved from https://mhaustralia.org/publication/recognition-and-respect-mental-health-carers-report-2012.
- Merikangas, K. R., Nakamura, E. F., & Kessler, R. C. (2009). Epidemiology of mental disorders in children and adolescents. Dialogues in Clinical Neuroscience, 11(1), 7–20.Google Scholar
- Morgan, V. A., Waterreus, A., Jablensky, A., Mackinnon, A., McGrath, J. J., Carr, V.,… Saw, S. (2012). People living with psychotic illness in 2010: The second Australian national survey of psychosis. Australian & New Zealand Journal of Psychiatry, 46(8), 735–752. https://doi.org/10.1177/0004867412449877.CrossRefGoogle Scholar
- Ohaeri, J. U. (2003). The burden of caregiving in families with a mental illness: A review of 2002. Current Opinion in Psychiatry, 16(4), 457–465. https://doi.org/10.1097/01.yco.0000079212.36371.c0.Google Scholar
- Pakenham, K. I., Stebbins, P., Cannon, T., & Samios, C. (2005). Carers in contemporary Australia: Relations among carer illness/disability groups, biographics, caring context, coping and distress. Retrieved from https://espace.library.uq.edu.au/view/UQ:8859/Carer_Report_Nov.pdf.
- Roick, C., Heider, D., Bebbington, P. E., Angermeyer, M. C., Azorin, J., Brugha, T. S., Kilian, R., Johnson, S., Toumi, M., & Kornfeld, A. (2007). Burden on caregivers of people with schizophrenia: Comparison between Germany and Britain. British Journal of Psychiatry, 190, 333–338.CrossRefGoogle Scholar
- Royal Australian and New Zealand College of Psychiatrists. (2015). Re: Improved assessment process for carer payment and carer allowance. Retrieved from https://www.ranzcp.org/Files/Resources/Submissions/4346-RANZCP-SUB-President-to-K-Paton-re-DSS-Carer.aspx.
- SurveyMonkey. (2016). SurveyMonkey: Create surveys, get answers. Retrieved from http://www.surveymonkey.com.
- van den Berg, B., Brouwer, W., van Exel, J., Koopmanschap, M., van den Bos, G. A., & Rutten, F. (2006). Economic valuation of informal care: Lessons from the application of the opportunity costs and proxy good methods. Social Science & Medicine, 62(4), 835–845. https://doi.org/10.1016/j.socscimed.2005.06.046.CrossRefGoogle Scholar
- Viana, M. C., Gruber, M. J., Shahly, V., Alhamzawi, A., Alonso, J., Andrade, L. H.,.. . Kessler, R. C. (2013). Family burden related to mental and physical disorders in the world: Results from the WHO World Mental Health (WMH) surveys. Revista Brasileira de Psiquiatria, 35(2), 115–125. https://doi.org/10.1590/1516-4446-2012-0919.CrossRefGoogle Scholar
- Wimo, A., Jonsson, L., & Zbrozek, A. (2010). The resource utilization in dementia (rud) instrument is valid for assessing informal care time in community-living patients with dementia. Journal of Nutrition, Health & Aging, 14(8), 685–690. https://doi.org/10.1007/s12603-010-0316-2.CrossRefGoogle Scholar