Hostname: page-component-848d4c4894-tn8tq Total loading time: 0 Render date: 2024-07-05T16:02:00.025Z Has data issue: false hasContentIssue false
  • English
  • Français

Understanding informal care burden domains’ impact on overall burden – a structural equation modeling approach with cross-sectional data from Germany

Published online by Cambridge University Press:  04 July 2023

Katharina Loboiko Open the ORCID record for Katharina Loboiko [Opens in a new window] ,
Michael Steiner Open the ORCID record for Michael Steiner [Opens in a new window]  and
Sabine Bohnet-Joschko Open the ORCID record for Sabine Bohnet-Joschko [Opens in a new window]
Katharina Loboiko*
Affiliation:
Research Associate, Chair of Management and Innovation in Health Care, Witten/Herdecke University, Germany Faculty of Management, Economics and Society, Witten/Herdecke University, Germany
Michael Steiner
Affiliation:
Professor of Marketing, Witten/Herdecke University, Germany Faculty of Management, Economics and Society, Witten/Herdecke University, Germany
Sabine Bohnet-Joschko
Affiliation:
Professor of Management and Innovation in Health Care, Witten/Herdecke University, Germany Faculty of Management, Economics and Society, Witten/Herdecke University, Germany
*
Corresponding author: Katharina Loboiko; Email: [email protected]
Get access Rights & Permissions [Opens in a new window]

Abstract

Informal caregivers are the core of long-term care for older and disabled people. Although previous research has studied factors that influence caregivers’ burden, little is known about the different care domains and why they influence the caregivers’ perceived burden. Drawing on a large-scale German survey, the current study makes a first attempt to address this research gap. The study used cross-sectional data on 1.429 informal caregivers. Germany is characterized by comprehensive but fragmented health and social protection systems oriented toward supporting informal care at home. Structural equation modeling (SmartPLS 3) was used to estimate the effects of five care domains on three burden dimensions and, ultimately, on the overall burden. Our results indicate that support in organizational matters had the highest impact on the overall perceived burden. The findings reveal that German caregivers particularly struggle with bureaucracy, i.e. an area that can directly be influenced by policymakers.

Keywords

Burden DimensionsCare domainsInformal CaregiversPerceived BurdenStructural Equation Modeling
Type
Article
Information
Journal of Social Policy , First View , pp. 1 - 17
Copyright
© The Author(s), 2023. Published by Cambridge University Press

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Balard, F., Gely-Nargeot, M.-C., Corvol, A., Saint-Jean, O. and Somme, D. (2016), ‘Case management for the elderly with complex needs: cross-linking the views of their role held by elderly people, their informal caregivers and the case managers.’ BMC Health Services Research, 16, 1, 635.CrossRefGoogle ScholarPubMed
Barczyk, D. and Kredler, M. (2019), ‘Long-Term Care Across Europe and the United States: The Role of Informal and Formal Care.’ Fiscal Studies, 40, 3, 329–373.CrossRefGoogle Scholar
Bastawrous, M. (2013), ‘Caregiver burden—A critical discussion.’ International Journal of Nursing Studies, 50, 3, 431–441.CrossRefGoogle ScholarPubMed
Chang, H.-Y., Chiou, C.-J. and Chen, N.-S. (2010), ‘Impact of mental health and caregiver burden on family caregivers’ physical health.’ Archives of Gerontology and Geriatrics, 50, 3, 267–271.CrossRefGoogle ScholarPubMed
Chappell, N. L. and Reid, R. C. (2002), ‘Burden and well-being among caregivers: examining the distinction.’ Gerontologist, 42, 6, 772–80.CrossRefGoogle ScholarPubMed
Chiao, C. Y., Wu, H. S. and Hsiao, C. Y. (2015), ‘Caregiver burden for informal caregivers of patients with dementia: A systematic review.’ International nursing review, 62, 3, 340–350.CrossRefGoogle ScholarPubMed
Cook, S. K., Snellings, L. and Cohen, S. A. (2018), ‘Socioeconomic and demographic factors modify observed relationship between caregiving intensity and three dimensions of quality of life in informal adult children caregivers.’ Health and Quality of Life Outcomes, 16, 1, 169.CrossRefGoogle ScholarPubMed
De Zwart, P., Bakx, P., van Doorslaer, E. (2017), ‘Will you still need me, will you still feed me when I’m 64? The health impact of caregiving to one’s spouse.’ Health economics, 26, 127–138.CrossRefGoogle ScholarPubMed
Engstler, H., Groh, A., Klaus, D., Mahne, K., Spuling, S., Wetzel, M., … Tesch-Römer, C. (2015), ‘German Ageing Survey (DEAS): Instruments of the Fifth Wave 2014.’Google Scholar
Estrada Fernández, M. E., Gil Lacruz, A. I., Gil Lacruz, M., and Viñas López, A. (2019), ‘Informal care. European situation and approximation of a reality.’ Health Policy, 123, 12, 1163–1172.CrossRefGoogle ScholarPubMed
Foster, L., Dale, S. B. and Brown, R. (2007), ‘How caregivers and workers fared in Cash and Counseling.’ Health Services Research, 42, 1p2, 510-532.CrossRefGoogle ScholarPubMed
Hair, J. F. Jr, Hult, G. T. M., Ringle, C. and Sarstedt, M. (2016), ‘A primer on partial least squares structural equation modeling (PLS-SEM).’ Thousand Oaks, California: Sage Publications.Google Scholar
Halpern, M. T., Fiero, M. H. and Bell, M. L. (2017), ‘Impact of caregiver activities and social supports on multidimensional caregiver burden: analyses from nationally-representative surveys of cancer patients and their caregivers.’ Quality of Life Research, 26, 6, 1587–1595.CrossRefGoogle ScholarPubMed
Hastert, T. A., Ruterbusch, J. J., Nair, M., Noor, M. I., Beebe-Dimmer, J. L., Schwartz, K., Baird, T. E., Harper, F. W. K., Thompson, H. and Schwartz, A. G. (2019), ‘Employment Outcomes, Financial Burden, Anxiety, and Depression Among Caregivers of African American Cancer Survivors.’ JCO Oncology Practice, 16, 3, e221–e233.CrossRefGoogle ScholarPubMed
Hoang, V. L., Green, T. and Bonner, A. (2019), ‘Informal caregivers of people undergoing haemodialysis: Associations between activities and burden.’ Journal of Renal Care, 45, 3, 151–158.CrossRefGoogle ScholarPubMed
Hovland, C. A., and Mallett, C. A. (2021), ‘Positive Aspects of Family Caregiving for Older Adults at End-of-Life: A Qualitative Examination.’ Journal of Social Work in End-of-Life & Palliative Care, 17, 1, 64–82.CrossRefGoogle ScholarPubMed
Ikart, E. M. (2019), ‘Survey questionnaire survey pretesting method: An evaluation of survey questionnaire via expert reviews technique.’ Asian Journal of Social Science Studies, 4, 2, n. page.CrossRefGoogle Scholar
Jahagirdar, D., Dimitris, M., Strumpf, E., Kaufmann, J., Harper, S., Heymann, J. and Nandi, A. (2020), ‘Balancing work and care: The effect of paid adult medical leave policies on employment in Europe.’ Journal of Social Policy, 50, 3, 1–17.Google Scholar
Kim, H., Chang, M., Rose, K. and Kim, S. (2012), ‘Predictors of caregiver burden in caregivers of individuals with dementia.’ Journal of Advanced Nursing, 68, 4, 846–855.CrossRefGoogle ScholarPubMed
Klarmann, M. and Feurer, S. (2018), ‘Control Variables in Marketing Research.’ Marketing ZFP, 40, 2, 26–40.CrossRefGoogle Scholar
Lamura, G., Döhner, H. and Kofahl, C. (2008), ‘Family carers of older people in Europe: A six-country comparative study’ (Vol. 9): LIT Verlag Münster.Google Scholar
Longo, F., and Notarnicola, E. (2018), ‘Home care for the elderly in Sweden, Germany and Italy: A case of multi-level governance strategy-making.’ Social Policy & Administration, 52, 7, 1303–1316.CrossRefGoogle Scholar
Lopez–Anuarbe, M., and Kohli, P. (2019), ‘Understanding male caregivers’ emotional, financial, and physical burden in the United States.’ Healthcare (Basel), 7, 2, 72.CrossRefGoogle ScholarPubMed
Lyons, J. G., Cauley, J. A. and Fredman, L. (2015), ‘The Effect of Transitions in Caregiving Status and Intensity on Perceived Stress Among 992 Female Caregivers and Noncaregivers.’ The Journals of Gerontology: Series A, 70, 8, 1018–1023.CrossRefGoogle ScholarPubMed
Milliken, A., Mahoney, E. K., Mahoney, K. J., Mignosa, K., Rodriguez, I., Cuchetti, C. and Inoue, M. (2019), ‘ “I’m just trying to cope for both of us”: Challenges and supports of family caregivers in participant-directed programs.’ Journal of Gerontological Social Work, 62, 2, 149–171.CrossRefGoogle ScholarPubMed
Pearlin, L. I., Mullan, J. T., Semple, S. J. and Skaff, M. M. (1990). Caregiving and the stress process: an overview of concepts and their measures. The Gerontologist, 30(5), 583–594. https://doi.org/10.1093/geront/30.5.583 CrossRefGoogle ScholarPubMed
Raithel, S., Sarstedt, M., Scharf, S. M. and Schwaiger, M. (2012), ‘On the relevance of customer satisfaction: Multiple drivers and multiple markets. ’ Journal of the Academy of Marketing Science, 40, 5, 509–525.CrossRefGoogle Scholar
Riedel, M. (2017), ‘Peer Review on ‘Germany’s latest reforms of the long-term care system”: Bypassing or catching up on Austrian standards?’; Peer Country Comments Paper-Austria.Google Scholar
Riffin, C., Van Ness, P. H., Wolff, J. L. and Fried, T. (2019), ‘Multifactorial Examination of Caregiver Burden in a National Sample of Family and Unpaid Caregivers.’ Journal of the American Geriatrics Society, 67, 2, 277–283.CrossRefGoogle Scholar
Ringle, C., Wende, S. and Becker, J.M. (2015), SmartPLS 3. SmartPLS GmbH, Boenningstedt. http://www.smartpls.com [accessed 02.05.2023]Google Scholar
Rodríguez Mañas, L., García-Sánchez, I., Hendry, A., Bernabei, R., Roller-Wirnsberger, R., Gabrovec, B., … Telo, M. (2018), ‘Key Messages for a Frailty Prevention and Management Policy in Europe from the Advantage Joint Action Consortium.’ The journal of nutrition, health & aging, 22, 8, 892–897.CrossRefGoogle ScholarPubMed
Sarstedt, M., Hair, J.F. and Ringle, C.M. (2023), ‘PLS-SEM: indeed a silver bullet” – retrospective observations and recent advances.’ Journal of Marketing Theory and Practice, 31, 3, 1–15.CrossRefGoogle Scholar
Savundranayagam, M. Y., Montgomery, R. J. and Kosloski, K. (2011), ‘A dimensional analysis of caregiver burden among spouses and adult children.’ The Gerontologist, 51, 3, 321–331.CrossRefGoogle ScholarPubMed
Schulz, R., Eden, J., Committee on Family Caregiving for Older Adults, Board on Health Care Services, Health and Medicine Division, and National Academies of Sciences, Engineering, and Medicine (Eds.). (2016). Families Caring for an Aging America, Washington (DC): National Academies Press (US).CrossRefGoogle Scholar
Sheets, D. J., Black, K. and Kaye, L. W. (2014), ‘Who cares for caregivers? Evidence-based approaches to family support.’ Journal of Gerontological Social Work, 57, 6–7, 525-530CrossRefGoogle ScholarPubMed
Stroka, M. A. (2014), ‘The Mental and Physical Burden of Caregiving.’ Ruhr Economic Papers 2014, 474, 1–27.Google Scholar
Van den Berg, B., Fiebig, D. G. and Hall, J. (2014), ‘Well-being losses due to care-giving.’ Journal of Health Economics, 35, 123–131.CrossRefGoogle ScholarPubMed
Van den Berg, B. and 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.CrossRefGoogle ScholarPubMed
Verbakel, E., Tamlagsrønning, S., Winstone, L., Fjær, E. L. and Eikemo, T. A. (2017), ‘Informal care in Europe: findings from the European Social Survey (2014) special module on the social determinants of health.’ European Journal of Public Health, 27(suppl_1), 90–95.CrossRefGoogle ScholarPubMed
Walsh, E. and Murphy, A. (2019), ‘Examining the effects of activities of daily living on informal caregiver strain.’ Journal of Health Services Research & Policy, 25, 2, 104–114.CrossRefGoogle ScholarPubMed
Wetzstein, M., Rommel, A., and Lange, C. (2016), ‘Informal caregivers-Germany’s largest nursing service.’ GBE kompakt, 6, 3, Berlin. https://edoc.rki.de/bitstream/handle/176904/3140/3_en.pdf. [accessed 07.04.2022]Google Scholar
Wolff, J. L., Spillman, B. C., Freedman, V. A. and Kasper, J. D. (2016), ‘A national profile of family and unpaid caregivers who assist older adults with health care activities.’ JAMA internal medicine, 176, 3, 372–379.CrossRefGoogle ScholarPubMed
Yu, H., Wang, X., He, R., Liang, R. and Zhou, L. (2015), ‘Measuring the caregiver burden of caring for community-residing people with Alzheimer’s disease.’ PLoS one, 10, 7, n. page.Google ScholarPubMed
Zigante, V. (2018), ‘Informal care in Europe.’ Exploring Formalisation, Availability and Quality, EC, London: School of Economics and Political Science, 4–38.Google Scholar
Supplementary material: File

Loboiko et al. supplementary material

Appendix A

Download Loboiko et al. supplementary material(File)
File 71.2 KB