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Community Mental Health Journal

, Volume 55, Issue 2, pp 279–295 | Cite as

Hours of Care and Caring Tasks Performed by Australian Carers of Adults with Mental Illness: Results from an Online Survey

  • Emily HielscherEmail author
  • Sandra Diminic
  • Jan Kealton
  • Meredith Harris
  • Yong Yi Lee
  • Harvey Whiteford
Original Paper

Abstract

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.

Keywords

Carers Caregivers Mental health Mental illness Australia 

Notes

Acknowledgements

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.

Funding

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.

Ethical Approval

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.

References

  1. Ae-Ngibise, K. A., Doku, V. C., Asante, K. P., & Owusu-Agyei, S. (2015). The experience of caregivers of people living with serious mental disorders: A study from rural Ghana. Global Health Action, 8, 26957.  https://doi.org/10.3402/gha.v8.26957.CrossRefGoogle Scholar
  2. Andrews, G., Pine, D. S., Hobbs, M. J., Anderson, T. M., & Sunderland, M. (2009). Neurodevelopmental disorders: Cluster 2 of the proposed meta-structure for DSM-V and ICD-11. Psychological Medicine, 39(12), 2013–2023.  https://doi.org/10.1017/S0033291709990274.CrossRefGoogle Scholar
  3. 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
  4. 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.
  5. 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.
  6. 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.
  7. 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.
  8. 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.
  9. Bornstein, M. H., Jager, J., & Putnick, D. L. (2013). Sampling in developmental science: Situations, shortcomings, solutions, and standards. Developmental Review, 33(4), 357–370.  https://doi.org/10.1016/j.dr.2013.08.003.CrossRefGoogle Scholar
  10. Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101.  https://doi.org/10.1191/1478088706qp063oa.CrossRefGoogle Scholar
  11. 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.
  12. Chaplin, R. (2004). General psychiatric services for adults with intellectual disability and mental illness. Journal of Intellectual Disability Research, 48, 1–10.  https://doi.org/10.1097/YCO.0b013e3283472524.CrossRefGoogle Scholar
  13. Coomber, K., & King, R. M. (2013). A longitudinal examination of burden and psychological distress in carers of people with an eating disorder. Social Psychiatry and Psychiatric Epidemiology, 48(1), 163–171.  https://doi.org/10.1007/s00127-012-0524-7.CrossRefGoogle Scholar
  14. Department of Human Services. (2016). Eligibility for carer payment. Retrieved from https://www.humanservices.gov.au/customer/enablers/eligibility-carer-payment.
  15. 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.
  16. Einfeld, S. L., Ellis, L. A., & Emerson, E. (2011). Comorbidity of intellectual disability and mental disorder in children and adolescents: A systematic review. Journal of Intellectual and Developmental Disability, 36(2), 137–143.  https://doi.org/10.1080/13668250.2011.572548.CrossRefGoogle Scholar
  17. Flyckt, L., Lothman, A., Jorgensen, L., Rylander, A., & Koernig, T. (2013). Burden of informal care giving to patients with psychoses: A descriptive and methodological study. International Journal of Social Psychiatry, 59(2), 137–146.  https://doi.org/10.1177/0020764011427239.CrossRefGoogle Scholar
  18. Forbes, A., While, A., & Mathes, L. (2007). Informal carer activities, carer burden and health status in multiple sclerosis. Clinical Rehabilitation, 21, 563–575.  https://doi.org/10.1177/0269215507075035.CrossRefGoogle Scholar
  19. 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
  20. Goodrich, K., Kaambwa, B., & Al-Janabi, H. (2012). The inclusion of informal care in applied economic evaluation: A review. Value in Health, 15(6), 975–981.  https://doi.org/10.1016/j.jval.2012.05.009.CrossRefGoogle Scholar
  21. 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
  22. Hadrys, T., Adamowski, T., & Kiejna, A. (2011). Mental disorder in Polish families: Is diagnosis a predictor of caregiver’s burden? Social Psychiatry and Psychiatric Epidemiology, 46(5), 363–372.  https://doi.org/10.1007/s00127-010-0200-8.CrossRefGoogle Scholar
  23. 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
  24. 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
  25. 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
  26. Hsiao, C. Y. (2010). Family demands, social support and caregiver burden in Taiwanese family caregivers living with mental illness: The role of family caregiver gender. Journal of Clinical Nursing, 19(23–24), 3494–3503.  https://doi.org/10.1111/j.1365-2702.2010.03315.x.CrossRefGoogle Scholar
  27. IBM Corp. (2013). IBM SPSS statistics for windows, Version 22.0. Armonk, NY: IBM Corp.Google Scholar
  28. Jardim, C., & Pakenham, K. (2010). Carers of adults with mental illness: Comparison of respite care users and non-users. Australian Psychologist, 45(1), 50–58.  https://doi.org/10.1080/00050060903286717.CrossRefGoogle Scholar
  29. Jardim, C., & Pakenham, K. I. (2009). Pilot investigation of the effectiveness of respite care for carers of an adult with mental illness. Clinical Psychologist, 13(3), 87–93.  https://doi.org/10.1080/13284200903353064.CrossRefGoogle Scholar
  30. Jungbauer, J., Wittmund, B., Dietrich, S., & Angermeyer, M. C. (2003). Subjective burden over 12 months in parents of patients with schizophrenia. Archives of Psychiatric Nursing, 17(3), 126–134.  https://doi.org/10.1016/s0883-9417(03)00056-6.CrossRefGoogle Scholar
  31. Kate, N., Grover, S., Kulhara, P., & Nehra, R. (2013). Caregiving appraisal in schizophrenia: A study from India. Social Science & Medicine, 98, 135–140.  https://doi.org/10.1016/j.socscimed.2013.09.005.CrossRefGoogle Scholar
  32. Loi, S. M., Dow, B., Moore, K., Hill, K., Russell, M., Cyarto, E.,... Lautenschlager, N. T. (2015). The adverse mental health of carers: Does the patient diagnosis play a role? Maturitas, 82(1), 134–138.  https://doi.org/10.1016/j.maturitas.2015.06.034.CrossRefGoogle Scholar
  33. Mackay, C., & Pakenham, K. I. (2012). A stress and coping model of adjustment to caring for an adult with mental illness. Community Mental Health Journal, 48(4), 450–462.  https://doi.org/10.1007/s10597-011-9435-4.CrossRefGoogle Scholar
  34. Mangalore, R., & Knapp, M. (2007). Cost of schizophrenia in England. The Journal of Mental Health Policy and Economics, 109, 23–41.Google Scholar
  35. 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.
  36. McCann, T. V., Lubman, D. I., & Clark, E. (2011). First-time primary caregivers’ experience of caring for young adults with first-episode psychosis. Schizophrenia Bulletin, 37(2), 381–388.  https://doi.org/10.1093/schbul/sbp085.CrossRefGoogle Scholar
  37. 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.
  38. 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.
  39. 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.
  40. 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
  41. 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
  42. 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
  43. Pakenham, K. I. (2012). Caregiving tasks in caring for an adult with mental illness and associations with adjustment outcomes. International Journal of Behavioral Medicine, 19(2), 186–198.  https://doi.org/10.1007/s12529-011-9155-8.CrossRefGoogle Scholar
  44. 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.
  45. Patel, M., Chawla, R., Krynicki, C. R., Rankin, P., & Upthegrove, R. (2014). Health beliefs and carer burden in first episode psychosis. BMC Psychiatry, 14(171), 1–7.  https://doi.org/10.1186/1471-244X-14-171.Google Scholar
  46. Pirkis, J., Burgess, P., Hardy, J., Harris, M., Slade, T., & Johnston, A. (2010). Who cares? A profile of people who care for relatives with a mental disorder. Australian & New Zealand Journal of Psychiatry, 44, 929–937.  https://doi.org/10.3109/00048674.2010.493858.CrossRefGoogle Scholar
  47. Pressler, S. J., Gradus-Pizlo, I., Chubinski, S. D., Smith, G., Wheeler, S., Sloan, R., & Jung, M. (2013). Family caregivers of patients with heart failure: A longitudinal study. Journal of Cardiovascular Nursing, 28(5), 417–428.  https://doi.org/10.1097/JCN.0b013e3182563877.CrossRefGoogle Scholar
  48. 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
  49. 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.
  50. Savundranayagam, M. Y., Montgomery, R. J. V., & Kosloski, K. (2011). A dimensional analysis of caregiver burden among spouses and adult children. Gerontologist, 51(3), 321–331.  https://doi.org/10.1093/geront/gnq10.CrossRefGoogle Scholar
  51. SurveyMonkey. (2016). SurveyMonkey: Create surveys, get answers. Retrieved from http://www.surveymonkey.com.
  52. 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
  53. van den Berg, B., & Spauwen, P. (2006). Measurement of informal care: An empirical study into the valid measurement of time spent on informal caregiving. Health Economics, 15(5), 447–460.  https://doi.org/10.1002/hec.1075.CrossRefGoogle Scholar
  54. van Excel, J., de Graaf, G., & Brouwer, W. (2007). Care for a break? An investigation of informal caregivers’ attitudes toward respite care using Q-methodology. Health Policy, 83(2), 332–342.  https://doi.org/10.1016/j.healthpol.2007.02.002.CrossRefGoogle Scholar
  55. 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
  56. 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

Copyright information

© Springer Science+Business Media, LLC, part of Springer Nature 2018

Authors and Affiliations

  1. 1.Policy and Epidemiology Group, Queensland Centre for Mental Health Research (QCMHR)The Park Centre for Mental HealthBrisbaneAustralia
  2. 2.School of Public Health, Faculty of MedicineThe University of QueenslandBrisbaneAustralia
  3. 3.Centre for Clinical Research, Faculty of MedicineThe University of QueenslandBrisbaneAustralia
  4. 4.Carer consultantGold CoastAustralia
  5. 5.Institute of Health Metrics and EvaluationUniversity of WashingtonSeattleUSA

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