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The provision of informal care in terminal illness: An analysis of carers? needs using a discrete choice experiment

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  • Jane Hall

    ()
    (CHERE, University of Technology, Sydney)

  • Patricia Kenny

    ()
    (CHERE, University of Technology, Sydney)

  • Ishrat Hossain

    ()
    (CHERE, University of Technology, Sydney)

Abstract

There is an increasing expectation that families will provide care at home for those with chronic, acute and terminal illness. There is a range of services available to support the home care of these patients. Carers of those in the terminal phase of illness face different demands and challenges than those caring for the chronically ill, disabled or aging; the patient?s health is deteriorating, often rapidly, and death is imminent. Yet the needs and requirements of this group of carers has been far less studied than those caring for people with chronic and continuing conditions. We argue that considering the reciprocal nature of relationships is important in understanding the provision of informal care. Carers? feelings for which tasks and responsibilities are most difficult are not the same as their preferences for additional support services. Carers preferences are influenced by their relationship with the patient. This study investigates carers? preferences for services to support their caregiving role. Carer preferences were investigated using a discrete choice experiment, in which 168 carers were asked first to choose between two packages of care and then between the chosen package and their current support. Data were analysed using mixed logit. The DCE results showed that the support most wanted was palliative care nursing, general nursing, and telephone advice available 24 hours. Carers providing high levels of care wanted respite care provided at home and help with the patient?s personal care. Where the care-giving need was relatively low, carers wanted help with household tasks, transport and a case co-ordinator. Overall, carers appeared to be satisfied with the support they received from palliative care services, but this varied with the personal circumstances of the carer. This study provides useful insights for those who plan and deliver palliative care in the community. It supports the view that effective support for carers must recognise the differing needs of individual carers. While our results do not provide any insight into how the pre-existing relationship between carer and recipient may affect preferences for care, it points to the need to explore further differences in preferences across respondents both in discrete choice work in general, and in designing services to support rather than replace informal carers.

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File URL: http://www.chere.uts.edu.au/pdf/wp2007_12.pdf
File Function: First version, December 2007, Current version December 2007
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Bibliographic Info

Paper provided by CHERE, University of Technology, Sydney in its series Working Papers with number 2007/12.

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Date of creation: Dec 2007
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Handle: RePEc:her:chewps:2007/12

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Web page: http://www.chere.uts.edu.au
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Related research

Keywords: Informal care; carer's perspective; discrete choce experiment;

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References

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  1. van den Berg, Bernard & Brouwer, Werner & van Exel, Job & Koopmanschap, Marc & van den Bos, Geertrudis A.M. & Rutten, Frans, 2006. "Economic valuation of informal care: Lessons from the application of the opportunity costs and proxy good methods," Social Science & Medicine, Elsevier, vol. 62(4), pages 835-845, February.
  2. Brownstone, David & Train, Kenneth, 1999. "Forecasting new product penetration with flexible substitution patterns," University of California Transportation Center, Working Papers qt3tb6j874, University of California Transportation Center.
  3. Bernard van denBerg & Werner Brouwer & Job van Exel & Marc Koopmanschap, 2005. "Economic valuation of informal care: the contingent valuation method applied to informal caregiving," Health Economics, John Wiley & Sons, Ltd., vol. 14(2), pages 169-183.
  4. Kenneth Train, 2003. "Discrete Choice Methods with Simulation," Online economics textbooks, SUNY-Oswego, Department of Economics, number emetr2, January.
  5. Exel, Job van & Graaf, Gjalt de & Brouwer, Werner, 2007. "Care for a break? An investigation of informal caregivers' attitudes toward respite care using Q-methodology," Health Policy, Elsevier, vol. 83(2-3), pages 332-342, October.
  6. Sugden, Robert, 2002. "Beyond sympathy and empathy: Adam Smith's concept of fellow-feeling," Economics and Philosophy, Cambridge University Press, vol. 18(01), pages 63-87, April.
  7. van den Berg, Bernard & Al, Maiwenn & Brouwer, Werner & van Exel, Job & Koopmanschap, Marc, 2005. "Economic valuation of informal care: The conjoint measurement method applied to informal caregiving," Social Science & Medicine, Elsevier, vol. 61(6), pages 1342-1355, September.
  8. Bernard van den Berg & Han Bleichrodt & Louis Eeckhoudt, 2005. "The economic value of informal care: a study of informal caregivers' and patients' willingness to pay and willingness to accept for informal care," Health Economics, John Wiley & Sons, Ltd., vol. 14(4), pages 363-376.
  9. Hall, Jane & Viney, Rosalie & Haas, Marion & Louviere, Jordan, 2004. "Using stated preference discrete choice modeling to evaluate health care programs," Journal of Business Research, Elsevier, vol. 57(9), pages 1026-1032, September.
  10. Daniel McFadden & Kenneth Train, 2000. "Mixed MNL models for discrete response," Journal of Applied Econometrics, John Wiley & Sons, Ltd., vol. 15(5), pages 447-470.
  11. Brouwer, Werner B.F. & Exel, N. Job A. van & Berg, Bernard van den & Bos, Geertruidis A.M. van den & Koopmanschap, Marc A., 2005. "Process utility from providing informal care: the benefit of caring," Health Policy, Elsevier, vol. 74(1), pages 85-99, September.
  12. Werner B.F. Brouwer, 2006. "Too Important to Ignore: Informal Caregivers and Other Significant Others," PharmacoEconomics, Springer Healthcare | Adis, vol. 24(1), pages 39-41.
  13. David Revelt & Kenneth Train, 1998. "Mixed Logit With Repeated Choices: Households' Choices Of Appliance Efficiency Level," The Review of Economics and Statistics, MIT Press, vol. 80(4), pages 647-657, November.
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