IDEAS home Printed from https://ideas.repec.org/a/spr/patien/v11y2018i5d10.1007_s40271-018-0310-z.html
   My bibliography  Save this article

Adaptation, Acceptance and Adaptive Preferences in Health and Capability Well-Being Measurement Amongst Those Approaching End of Life

Author

Listed:
  • Joanna Coast

    (University of Bristol)

  • Cara Bailey

    (University of Birmingham)

  • Rosanna Orlando

    (CLAHRC Wessex, Health Sciences, University of Southampton)

  • Kathy Armour

    (Marie Curie Hospice West Midlands)

  • Rachel Perry

    (Marie Curie Hospice West Midlands)

  • Louise Jones

    (UCL)

  • Philip Kinghorn

    (University of Birmingham)

Abstract

Background and Objectives Adaptive preferences occur when people subconsciously alter their views to account for the possibilities available to them. Adaptive preferences may be problematic where these views are used in resource allocation decisions because they may lead to underestimation of the true benefits of providing services. This research explored the nature and extent of both adaptation (changing to better suit the context) and adaptive preferences (altering preferences in response to restricted options) in individuals approaching the end of life (EoL). Methods Qualitative data from ‘thinkaloud’ interviews with 33 hospice patients, 22 close persons and 17 health professionals were used alongside their responses to three health/well-being measures for use in resource allocation decisions: EQ-5D-5L (health status); ICECAP-A (adult capability); and ICECAP-SCM (Supportive Care Measure; EoL capability). Constant comparative analysis combined a focus on both verbalised perceptions across the three groups and responses to the measures. Results Data collection took place between October 2012 and February 2014. Informants spoke clearly about how patients had adapted their lives in response to symptoms associated with their terminal condition. It was often seen as a positive choice to accept their state and adapt in this way but, at the same time, most patients were fully aware of the health and capability losses that they had faced. Self-assessments of health and capability generally appeared to reflect the pre-adaptation state, although there were exceptions. Conclusion Despite adapting to their conditions, the reference group for individuals approaching EoL largely remained a healthy, capable population, and most did not show evidence of adaptive preferences.

Suggested Citation

  • Joanna Coast & Cara Bailey & Rosanna Orlando & Kathy Armour & Rachel Perry & Louise Jones & Philip Kinghorn, 2018. "Adaptation, Acceptance and Adaptive Preferences in Health and Capability Well-Being Measurement Amongst Those Approaching End of Life," The Patient: Patient-Centered Outcomes Research, Springer;International Academy of Health Preference Research, vol. 11(5), pages 539-546, October.
    • Handle: RePEc:spr:patien:v:11:y:2018:i:5:d:10.1007_s40271-018-0310-z
    DOI: 10.1007/s40271-018-0310-z
    as

    Download full text from publisher

    File URL: http://link.springer.com/10.1007/s40271-018-0310-z
    File Function: Abstract
    Download Restriction: Access to the full text of the articles in this series is restricted.
    File URL: https://libkey.io/10.1007/s40271-018-0310-z?utm_source=ideas
    LibKey link: if access is restricted and if your library uses this service, LibKey will redirect you to where you can use your library subscription to access this item
    ---><---

    As the access to this document is restricted, you may want to search for a different version of it.

    References listed on IDEAS

    as
    1. Greco, Giulia & Skordis-Worrall, Jolene & Mkandawire, Bryan & Mills, Anne, 2015. "What is a good life? Selecting capabilities to assess women's quality of life in rural Malawi," Social Science & Medicine, Elsevier, vol. 130(C), pages 69-78.
    2. Martha Nussbaum, 2003. "Capabilities As Fundamental Entitlements: Sen And Social Justice," Feminist Economics, Taylor & Francis Journals, vol. 9(2-3), pages 33-59.
    3. Amartya Sen, 2004. "Capabilities, Lists, And Public Reason: Continuing The Conversation," Feminist Economics, Taylor & Francis Journals, vol. 10(3), pages 77-80.
    4. Terry N. Flynn & Elisabeth Huynh & Tim J. Peters & Hareth Al‐Janabi & Sam Clemens & Alison Moody & Joanna Coast, 2015. "Scoring the Icecap‐a Capability Instrument. Estimation of a UK General Population Tariff," Health Economics, John Wiley & Sons, Ltd., vol. 24(3), pages 258-269, March.
    5. Huynh, Elisabeth & Coast, Joanna & Rose, John & Kinghorn, Philip & Flynn, Terry, 2017. "Values for the ICECAP-Supportive Care Measure (ICECAP-SCM) for use in economic evaluation at end of life," Social Science & Medicine, Elsevier, vol. 189(C), pages 114-128.
    Full references (including those not matched with items on IDEAS)

    Citations

    Citations are extracted by the CitEc Project, subscribe to its RSS feed for this item.
    as


    Cited by:

    1. Lina Rosengren & Anna Forsberg & Christina Brogårdh & Jan Lexell, 2021. "Life Satisfaction and Adaptation in Persons with Parkinson’s Disease—A Qualitative Study," IJERPH, MDPI, vol. 18(6), pages 1-12, March.
    2. Paul Mark Mitchell & Samantha Husbands & Sarah Byford & Philip Kinghorn & Cara Bailey & Tim J. Peters & Joanna Coast, 2021. "Challenges in developing capability measures for children and young people for use in the economic evaluation of health and care interventions," Health Economics, John Wiley & Sons, Ltd., vol. 30(9), pages 1990-2003, September.

    Most related items

    These are the items that most often cite the same works as this one and are cited by the same works as this one.
    1. Joanna Coast, 2019. "Assessing capability in economic evaluation: a life course approach?," The European Journal of Health Economics, Springer;Deutsche Gesellschaft für Gesundheitsökonomie (DGGÖ), vol. 20(6), pages 779-784, August.
    2. Paul Mark Mitchell & Samantha Husbands & Sarah Byford & Philip Kinghorn & Cara Bailey & Tim J. Peters & Joanna Coast, 2021. "Challenges in developing capability measures for children and young people for use in the economic evaluation of health and care interventions," Health Economics, John Wiley & Sons, Ltd., vol. 30(9), pages 1990-2003, September.
    3. Sollis, Kate & Yap, Mandy & Campbell, Paul & Biddle, Nicholas, 2022. "Conceptualisations of wellbeing and quality of life: A systematic review of participatory studies," World Development, Elsevier, vol. 160(C).
    4. Robinson, Jude & Chiumento, Anna & Kasujja, Rosco & Rutayisire, Theoneste & White, Ross, 2022. "The ‘good life’, personal appearance, and mental health of Congolese refugees in Rwanda and Uganda," Social Science & Medicine, Elsevier, vol. 293(C).
    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. Philip Kinghorn & Joanna Coast, 2018. "Assessing the capability to experience a 'good death': A qualitative study to directly elicit expert views on a new supportive care measure grounded in Sen's capability approach," PLOS ONE, Public Library of Science, vol. 13(2), pages 1-14, February.
    7. Judith Dams & Elisabeth Huynh & Steffi Riedel-Heller & Margrit Löbner & Christian Brettschneider & Hans-Helmut König, 2021. "German tariffs for the ICECAP-Supportive Care Measure (ICECAP-SCM) for use in economic evaluations at the end of life," The European Journal of Health Economics, Springer;Deutsche Gesellschaft für Gesundheitsökonomie (DGGÖ), vol. 22(3), pages 365-380, April.
    8. Antoinette Baujard & Muriel Gilardone, 2017. "Sen is not a capability theorist," Journal of Economic Methodology, Taylor & Francis Journals, vol. 24(1), pages 1-19, January.
    9. Chiappero-Martinetti, Enrica & Moroni, Stefano, 2007. "An analytical framework for conceptualizing poverty and re-examining the capability approach," Journal of Behavioral and Experimental Economics (formerly The Journal of Socio-Economics), Elsevier, vol. 36(3), pages 360-375, June.
    10. Sabina Alkire & Maria Emma Santos, 2010. "Acute Multidimensional Poverty: A New Index for Developing Countries," Human Development Research Papers (2009 to present) HDRP-2010-11, Human Development Report Office (HDRO), United Nations Development Programme (UNDP).
    11. Giulia Greco, 2018. "Setting the Weights: The Women’s Capabilities Index for Malawi," Social Indicators Research: An International and Interdisciplinary Journal for Quality-of-Life Measurement, Springer, vol. 135(2), pages 457-478, January.
    12. 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.
    13. Arif Wismadi & Mark Zuidgeest & Mark Brussel & Martin Maarseveen, 2014. "Spatial Preference Modelling for equitable infrastructure provision: an application of Sen’s Capability Approach," Journal of Geographical Systems, Springer, vol. 16(1), pages 19-48, January.
    14. Sabina Alkire, 2013. "Choosing Dimensions: The Capability Approach and Multidimensional Poverty," Palgrave Macmillan Books, in: Nanak Kakwani & Jacques Silber (ed.), The Many Dimensions of Poverty, chapter 6, pages 89-119, Palgrave Macmillan.
    15. Pelenc, Jérôme, 2014. "Combining the capability approach and Max-Neef’s needs approach for a better assessment of multidimensional well-being and inequalities: a case study perspective with vulnerable teenagers of the regio," MPRA Paper 66277, University Library of Munich, Germany.
    16. Karel Macků & Vít Voženílek & Vít Pászto, 2022. "Linking the quality of life index and the typology of European administrative units," Journal of International Development, John Wiley & Sons, Ltd., vol. 34(1), pages 145-174, January.
    17. Khaufelo Raymond Lekobane, 2022. "Leaving No One Behind: An Individual-Level Approach to Measuring Multidimensional Poverty in Botswana," Social Indicators Research: An International and Interdisciplinary Journal for Quality-of-Life Measurement, Springer, vol. 162(1), pages 179-208, July.
    18. Sabina Alkire, 2008. "Concepts and Measures of Agency," OPHI Working Papers 9, Queen Elizabeth House, University of Oxford.
    19. Lien Nguyen & Hanna Jokimäki & Ismo Linnosmaa & Eirini-Christina Saloniki & Laurie Batchelder & Juliette Malley & Hui Lu & Peter Burge & Birgit Trukeschitz & Julien Forder, 2022. "Valuing informal carers’ quality of life using best-worst scaling—Finnish preference weights for the Adult Social Care Outcomes Toolkit for carers (ASCOT-Carer)," The European Journal of Health Economics, Springer;Deutsche Gesellschaft für Gesundheitsökonomie (DGGÖ), vol. 23(3), pages 357-374, April.
    20. Ballon, Paola, 2013. "The selection of functionings and capabilities: A survey of empirical studies," PEP Working Papers 160427, Partnership for Economic Policy (PEP).

    More about this item

    Statistics

    Access and download statistics

    Corrections

    All material on this site has been provided by the respective publishers and authors. You can help correct errors and omissions. When requesting a correction, please mention this item's handle: RePEc:spr:patien:v:11:y:2018:i:5:d:10.1007_s40271-018-0310-z. See general information about how to correct material in RePEc.

    If you have authored this item and are not yet registered with RePEc, we encourage you to do it here. This allows to link your profile to this item. It also allows you to accept potential citations to this item that we are uncertain about.

    If CitEc recognized a bibliographic reference but did not link an item in RePEc to it, you can help with this form .

    If you know of missing items citing this one, you can help us creating those links by adding the relevant references in the same way as above, for each refering item. If you are a registered author of this item, you may also want to check the "citations" tab in your RePEc Author Service profile, as there may be some citations waiting for confirmation.

    For technical questions regarding this item, or to correct its authors, title, abstract, bibliographic or download information, contact: Sonal Shukla or Springer Nature Abstracting and Indexing (email available below). General contact details of provider: http://www.springer.com .

    Please note that corrections may take a couple of weeks to filter through the various RePEc services.

    IDEAS is a RePEc service. RePEc uses bibliographic data supplied by the respective publishers.