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A Multinational Longitudinal Study Incorporating Intensive Methods to Examine Caregiver Experiences in the Context of Chronic Health Conditions: Protocol of the ENTWINE-iCohort

Author

Listed:
  • Val Morrison

    (School of Human and Behavioural Sciences, Bangor University, Bangor LL57 2AS, UK)

  • Mikołaj Zarzycki

    (School of Human and Behavioural Sciences, Bangor University, Bangor LL57 2AS, UK)

  • Noa Vilchinsky

    (Department of Psychology, Faculty of Social Sciences, Bar-Ilan Univeristy, Ramat Gan 5290002, Israel)

  • Robbert Sanderman

    (Department of Health Psychology, University Medical Center Groningen, University of Groningen, 9713 GZ Groningen, The Netherlands)

  • Giovanni Lamura

    (Centre for Socio-Economic Research on Ageing, IRCCS INRCA-National Institute of Health and Science on Ageing, 60124 Ancona, Italy)

  • Oliver Fisher

    (Centre for Socio-Economic Research on Ageing, IRCCS INRCA-National Institute of Health and Science on Ageing, 60124 Ancona, Italy
    Department of Economics and Social Sciences, Università Politecnica delle Marche, 60121 Ancona, Italy)

  • Giulia Ferraris

    (Department of Health Psychology, University Medical Center Groningen, University of Groningen, 9713 GZ Groningen, The Netherlands)

  • Saif Elayan

    (Department of Economics, Econometrics and Finance, Faculty of Economics and Business, University of Groningen, Nettelbosje 2, 9747 AE Groningen, The Netherlands)

  • Erik Buskens

    (Faculty of Medical Sciences, Antonius Deusinglaan 1, 9713 AV Groningen, The Netherlands)

  • Eva Bei

    (Department of Psychology, Faculty of Social Sciences, Bar-Ilan Univeristy, Ramat Gan 5290002, Israel)

  • Anne Looijmans

    (Department of Health Psychology, University Medical Center Groningen, University of Groningen, 9713 GZ Groningen, The Netherlands)

  • Viola Angelini

    (Department of Economics, Econometrics and Finance, Faculty of Economics and Business, University of Groningen, Nettelbosje 2, 9747 AE Groningen, The Netherlands)

  • Mariët Hagedoorn

    (Department of Health Psychology, University Medical Center Groningen, University of Groningen, 9713 GZ Groningen, The Netherlands)

Abstract

Informal caregivers are those who provide unpaid care to a relative or friend with a chronic illness, disability or other long-lasting health or care need. Providing informal care in the context of chronic health conditions presents a significant global challenge. Examination of the determinants of informal caregivers’ behaviour, especially in terms of motivations and willingness to provide/receive care, is crucial to understanding the nature of caregiver and care recipient experiences. A large group of international researchers have co-operated to execute the ENTWINE iCohort-a multinational, transdisciplinary, longitudinal study incorporating intensive methods to examine caregiver experiences in the context of chronic health conditions. The aim of ENTWINE-iCohort is to investigate the broad spectrum of factors, i.e., cultural, personal, geographical, relational, psychological, and economic that may affect motivations, willingness to provide or receive care, among diverse groups of informal caregivers and their care recipients, in different countries that have different care systems. Study questionnaires will be disseminated on-line in nine countries: Germany, Greece, Ireland, Italy, Israel, the Netherlands, Poland, Sweden, and the UK. Cross-sectional and longitudinal multivariate analysis, including intensive longitudinal and dyadic data analysis will be applied to examine the relative contribution of the above factors to caregiver or care recipient wellbeing.

Suggested Citation

  • Val Morrison & Mikołaj Zarzycki & Noa Vilchinsky & Robbert Sanderman & Giovanni Lamura & Oliver Fisher & Giulia Ferraris & Saif Elayan & Erik Buskens & Eva Bei & Anne Looijmans & Viola Angelini & Mari, 2022. "A Multinational Longitudinal Study Incorporating Intensive Methods to Examine Caregiver Experiences in the Context of Chronic Health Conditions: Protocol of the ENTWINE-iCohort," IJERPH, MDPI, vol. 19(2), pages 1-17, January.
    • Handle: RePEc:gam:jijerp:v:19:y:2022:i:2:p:821-:d:723065
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    References listed on IDEAS

    as
    1. Carmichael, F. & Charles, S. & Hulme, C., 2010. "Who will care? Employment participation and willingness to supply informal care," Journal of Health Economics, Elsevier, vol. 29(1), pages 182-190, January.
    2. Erik Landfeldt & Niklas Zethraeus & Peter Lindgren, 2019. "Standardized Questionnaire for the Measurement, Valuation, and Estimation of Costs of Informal Care Based on the Opportunity Cost and Proxy Good Method," Applied Health Economics and Health Policy, Springer, vol. 17(1), pages 15-24, February.
    3. Bom, Judith & Bakx, Pieter & Schut, Frederik & van Doorslaer, Eddy, 2019. "Health effects of caring for and about parents and spouses," The Journal of the Economics of Ageing, Elsevier, vol. 14(C).
    4. Marieke Krol & Jocé Papenburg & Job van Exel, 2015. "Does Including Informal Care in Economic Evaluations Matter? A Systematic Review of Inclusion and Impact of Informal Care in Cost-Effectiveness Studies," PharmacoEconomics, Springer, vol. 33(2), pages 123-135, February.
    5. Emanuele Arcà & Francesco Principe & Eddy Van Doorslaer, 2020. "Death by austerity? The impact of cost containment on avoidable mortality in Italy," Health Economics, John Wiley & Sons, Ltd., vol. 29(12), pages 1500-1516, December.
    6. Bernard Berg & Werner Brouwer & Marc Koopmanschap, 2004. "Economic valuation of informal care," The European Journal of Health Economics, Springer;Deutsche Gesellschaft für Gesundheitsökonomie (DGGÖ), vol. 5(1), pages 36-45, February.
    7. Aviad Tur-Sinai & Andrea Teti & Alexander Rommel & Valentina Hlebec & Giovanni Lamura, 2020. "How Many Older Informal Caregivers Are There in Europe? Comparison of Estimates of Their Prevalence from Three European Surveys," IJERPH, MDPI, vol. 17(24), pages 1-17, December.
    8. G. Kempen & L. Eijk, 1995. "The psychometric properties of the SSL12-I, a short scale for measuring social support in the elderly," Social Indicators Research: An International and Interdisciplinary Journal for Quality-of-Life Measurement, Springer, vol. 35(3), pages 303-312, July.
    9. Georgia Casanova & Mirko Di Rosa & Oliver Fisher & Giovanni Lamura, 2020. "Between Migrant Care Work and New Occupational Welfare Tools: Changing Home Care Arrangements in Italy," IJERPH, MDPI, vol. 17(15), pages 1-18, July.
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