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What do people value when they provide unpaid care for an older person? A meta-ethnography with interview follow-up

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  • Al-Janabi, Hareth
  • Coast, Joanna
  • Flynn, Terry N.

Abstract

Government policies to shift care into the community and demographic changes mean that unpaid (informal) carers will increasingly be relied on to deliver care, particularly to older people. As a result, careful consideration needs to be given to informal care in economic evaluations. Current methods for economic evaluations may neglect important aspects of informal care. This paper reports the development of a simple measure of the caring experience for use in economic evaluations. A meta-ethnography was used to reduce qualitative research to six conceptual attributes of caring. Sixteen semi-structured interviews were then conducted with carers of older people, to check the attributes and develop them into the measure. Six attributes of the caring experience comprise the final measure: getting on, organisational assistance, social support, activities, control, and fulfilment. The final measure (the Carer Experience Scale) focuses on the process of providing care, rather than health outcomes from caring. Arguably this provides a more direct assessment of carers' welfare. Following work to test and scale the measure, it may offer a promising way of incorporating the impact on carers in economic evaluations.

Suggested Citation

  • Al-Janabi, Hareth & Coast, Joanna & Flynn, Terry N., 2008. "What do people value when they provide unpaid care for an older person? A meta-ethnography with interview follow-up," Social Science & Medicine, Elsevier, vol. 67(1), pages 111-121, July.
    • Handle: RePEc:eee:socmed:v:67:y:2008:i:1:p:111-121
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    References listed on IDEAS

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    1. 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.
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    1. Camille Bou, 2023. "Factors Associated with the Quality-of-Life of Young Unpaid Carers: A Systematic Review of the Evidence from 2003 to 2019," IJERPH, MDPI, vol. 20(6), pages 1-15, March.
    2. Bou, Camille, 2023. "Factors associated with the quality-of-life of young unpaid carers: a systematic review of the evidence from 2003 to 2019," LSE Research Online Documents on Economics 118357, London School of Economics and Political Science, LSE Library.
    3. Juan Oliva-Moreno & Marta Trapero-Bertran & Luz Maria Peña-Longobardo & Raúl del Pozo-Rubio, 2017. "The Valuation of Informal Care in Cost-of-Illness Studies: A Systematic Review," PharmacoEconomics, Springer, vol. 35(3), pages 331-345, March.
    4. Jackson, Louise J. & Roberts, Tracy E., 2015. "Conceptualising quality of life outcomes for women participating in testing for sexually transmitted infections: A systematic review and meta-synthesis of qualitative research," Social Science & Medicine, Elsevier, vol. 143(C), pages 162-170.
    5. Kibel, Mia & Vanstone, Meredith, 2017. "Reconciling ethical and economic conceptions of value in health policy using the capabilities approach: A qualitative investigation of Non-Invasive Prenatal Testing," Social Science & Medicine, Elsevier, vol. 195(C), pages 97-104.
    6. Lowe, Thomas A. & Meijering, Louise & de Haas, Billie, 2023. "The role of performativity in informal dementia carers' capability to be mobile," Social Science & Medicine, Elsevier, vol. 329(C).
    7. Ilene L. Hollin & Benjamin M. Craig & Joanna Coast & Kathleen Beusterien & Caroline Vass & Rachael DiSantostefano & Holly Peay, 2020. "Reporting Formative Qualitative Research to Support the Development of Quantitative Preference Study Protocols and Corresponding Survey Instruments: Guidelines for Authors and Reviewers," The Patient: Patient-Centered Outcomes Research, Springer;International Academy of Health Preference Research, vol. 13(1), pages 121-136, February.
    8. Davey, Vanessa, 2021. "Influences of service characteristics and older people’s attributes on outcomes from direct payments," LSE Research Online Documents on Economics 108401, London School of Economics and Political Science, LSE Library.
    9. Maria Gheorghe & Renske J. Hoefman & Matthijs M. Versteegh & Job Exel, 2019. "Estimating Informal Caregiving Time from Patient EQ-5D Data: The Informal CARE Effect (iCARE) Tool," PharmacoEconomics, Springer, vol. 37(1), pages 93-103, January.
    10. Lisa A. Prosser & Kara Lamarand & Acham Gebremariam & Eve Wittenberg, 2015. "Measuring Family HRQoL Spillover Effects Using Direct Health Utility Assessment," Medical Decision Making, , vol. 35(1), pages 81-93, January.
    11. Rob Sheldon & Martin Dix & Terry Flynn & Paul Metcalfe, 2013. "Workshop report: good data is key to the development of good models: so how is innovation in data collection keeping apace?," Chapters, in: Stephane Hess & Andrew Daly (ed.), Choice Modelling, chapter 6, pages 125-143, Edward Elgar Publishing.
    12. Simon, Judit & Anand, Paul & Gray, Alastair & Rugkåsa, Jorun & Yeeles, Ksenija & Burns, Tom, 2013. "Operationalising the capability approach for outcome measurement in mental health research," Social Science & Medicine, Elsevier, vol. 98(C), pages 187-196.
    13. Ashley A. Leech & Pei-Jung Lin & Brittany D’Cruz & Susan K. Parsons & Tara A. Lavelle, 2023. "Family Spillover Effects: Are Economic Evaluations Misrepresenting the Value of Healthcare Interventions to Society?," Applied Health Economics and Health Policy, Springer, vol. 21(1), pages 5-10, January.
    14. Mihic, Marko M. & Todorovic, Marija Lj. & Obradovic, Vladimir Lj., 2014. "Economic analysis of social services for the elderly in Serbia: Two sides of the same coin," Evaluation and Program Planning, Elsevier, vol. 45(C), pages 9-21.
    15. Eve Wittenberg & Grant A. Ritter & Lisa A. Prosser, 2013. "Evidence of Spillover of Illness among Household Members," Medical Decision Making, , vol. 33(2), pages 235-243, February.
    16. Emmanouil Mentzakis & Mandy Ryan & Paul McNamee, 2011. "Using discrete choice experiments to value informal care tasks: exploring preference heterogeneity," Health Economics, John Wiley & Sons, Ltd., vol. 20(8), pages 930-944, August.
    17. Hareth Al-Janabi & Terry Flynn & Joanna Coast, 2011. "QALYs and Carers," PharmacoEconomics, Springer, vol. 29(12), pages 1015-1023, December.
    18. Coast, Joanna, 2018. "A history that goes hand in hand: Reflections on the development of health economics and the role played by Social Science & Medicine, 1967–2017," Social Science & Medicine, Elsevier, vol. 196(C), pages 227-232.
    19. Renske J. Hoefman & Job van Exel & John M. Rose & E. J. van de Wetering & Werner B. F. Brouwer, 2014. "A Discrete Choice Experiment to Obtain a Tariff for Valuing Informal Care Situations Measured with the CarerQol Instrument," Medical Decision Making, , vol. 34(1), pages 84-96, January.
    20. Tessa Peasgood & Clara Mukuria & Jill Carlton & Janice Connell & Nancy Devlin & Karen Jones & Rosemary Lovett & Bhash Naidoo & Stacey Rand & Juan Carlos Rejon-Parrilla & Donna Rowen & Aki Tsuchiya & J, 2021. "What is the best approach to adopt for identifying the domains for a new measure of health, social care and carer-related quality of life to measure quality-adjusted life years? Application to the dev," The European Journal of Health Economics, Springer;Deutsche Gesellschaft für Gesundheitsökonomie (DGGÖ), vol. 22(7), pages 1067-1081, September.

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