The cost of caring: out-of-pocket expenditures and financial hardship among Canadian carers

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Karen A. Duncan University of Manitoba, Canada

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Shahin Shooshtari University of Manitoba, Canada

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Kerstin Roger University of Manitoba, Canada

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Janet Fast University of Alberta, Canada

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Jing Han University of Manitoba, Canada

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Many carers spend money out of their own pockets on the care-related needs of their family members or friends, and this spending may expose carers to a higher risk of financial hardship. Using data from a nationally representative sample of family carers drawn from Statistics Canada’s 2012 General Social Survey on Caregiving and Care Receiving, we find that nearly one in five carers reports experiencing financial hardship. The results from multivariate logistic regression analysis show that care-related out-of-pocket expenditures are significant predictors of financial hardship. The results suggest establishing personal financial planning strategies and public policies to minimise the risk of incurring financial hardship due to care-related out-of-pocket expenditures.

  • Balfe, M., Butow, P., O’Sullivan, E., Gooberman-Hill, R., Timmons, A. and Sharp, L. (2016) The financial impact of head and neck cancer caregiving: a qualitative study, Psycho-Oncology, 25: 14417. doi: 10.1002/pon.4079

    • Search Google Scholar
    • Export Citation
  • Carers UK (2014) Caring and family finances inquiry, UK report, www.carersuk.org/36-for-professionals/policy-eng/report/138-caring-family-finances-inquiry

    • Search Google Scholar
    • Export Citation
  • Carers UK (2017) State of caring 2017, www.carersuk.org/for-professionals/policy/policy-library/state-of-caring-report-2017

  • Carers UK (2018) State of caring 2018, www.carersuk.org/for-professionals/policy/policy-library/state-of-caring-2018-2

  • Carey, M., Paul, C., Cameron, E., Lynagh, M., Hall, A. and Tzelepis, F. (2012) Financial and social impact of supporting a haematological cancer survivor, European Journal of Cancer Care, 21: 16976. doi: 10.1111/j.1365-2354.2011.01302.x

    • Search Google Scholar
    • Export Citation
  • De Oliveira, C., Bremner, K.E., Ni, A., Alibhai, S.M.H., Laporte, A. and Krahn, M.D. (2014) Patient time and out-of-pocket costs for long-term prostate cancer survivors in Ontario, Canada, Journal of Cancer Survivorship, 8(1): 920. doi: 10.1007/s11764-013-0305-7

    • Search Google Scholar
    • Export Citation
  • Dumont, S., Jacobs, P., Turcotte, V., Anderson, D. and Harel, F. (2010) The trajectory of palliative care costs over the last 5 months of life: a Canadian longitudinal study, Palliative Medicine, 24(6): 63040. doi: 10.1177/0269216310368453

    • Search Google Scholar
    • Export Citation
  • Dumont, S., Jacobs, P., Turcotte, V., Turcotte, S. and Johnston, G. (2015) Palliative care costs in Canada: a descriptive comparison of studies of urban and rural patients near end of life, Palliative Medicine, 29(10): 90817. doi: 10.1177/0269216315583620

    • Search Google Scholar
    • Export Citation
  • Duncan, K.A., Shooshtari, S., Roger, K. and Fast, J.E. (2013) Care-related out-of-pocket costs: final report, report submitted to Human Resources and Skills Development Canada, Gatineau, PQ.

    • Search Google Scholar
    • Export Citation
  • Duncan, K.A., Shooshtari, S., Roger, K., Fast, J. and Han, J. (2016) Care-related out-of-pocket expenditures, Journal of Financial Counseling and Planning, 27(2): 27796. doi: 10.1891/1052-3073.27.2.277

    • Search Google Scholar
    • Export Citation
  • Evercare (2007) Evercare® study of family caregivers: what they spend, what they sacrifice: the personal financial toll of caring for a loved one, www.caregiving.org/research/impact-of-caregiving/

    • Search Google Scholar
    • Export Citation
  • Fast, J. (2015) Caregiving for Older Adults with Disabilities: Present Costs, Future Challenges, IRPP Study 23, Montreal, QP: Institute for Research on Public Policy, http://irpp.org/research-studies/caregiving-for-older-adults-with-disabilities/

    • Search Google Scholar
    • Export Citation
  • Fast, J., Keating, N., Eales, J., Kim, C. and Lee, Y. (2020) Trajectories of family care over the lifecourse: evidence from Canada, Ageing & Society, 118. doi: 10.1017/S0144686X19001806

    • Search Google Scholar
    • Export Citation
  • Himmelstein, D.U., Woolhandler, S., Sarra, J. and Guyatt, G. (2014) Health issues and health care expenses in Canadian bankruptcies and insolvencies, International Journal of Health Services, 44(1): 723. doi: 10.2190/HS.44.1.b

    • Search Google Scholar
    • Export Citation
  • Keating, N.C., Fast, J.E., Lero, D.S., Lucas, S.J. and Eales, J. (2014) A taxonomy of the economic costs of family care to adults, Journal of Economics of Aging, 3: 1120. doi: 10.1016/j.jeoa.2014.03.002

    • Search Google Scholar
    • Export Citation
  • Keefe, J. (2011) Supporting Caregivers and Caregiving in an Aging Canada, IRPP Study 23, Montreal, QP: Institute for Research on Public Policy, http://irpp.org/research-studies/study-no23/

    • Search Google Scholar
    • Export Citation
  • Kemeny, A. (2012) General social survey – cycle 26: caregiving and care receiving questionnaire, Statistics Canada Catalogue no. 12M0026X, www23.statcan.gc.ca/imdb/p2SV.pl?Function=getSurvey&Id=123735

    • Search Google Scholar
    • Export Citation
  • Kodate, N. and Timonen, V. (2017) Bringing the family in through the back door: the stealthy expansion of family care in Asian and European long-term care policy, Journal of Cross Cultural Gerontology, 32: 291301. doi: 10.1007/s10823-017-9325-5

    • Search Google Scholar
    • Export Citation
  • Lauzier, S., Lévesque, P., Mondor, M., Drolet, M., Coyle, D., Brisson, J., Mâsse, B., Provencher, L., Robidoux, A. and Maunsell, E. (2013) Out-of-pocket costs in the year after early breast cancer among Canadian women and spouses, Journal of the National Cancer Institute, 105(4): 28092. doi: 10.1093/jnci/djs512

    • Search Google Scholar
    • Export Citation
  • Lee, Y. and Zurlo, K.A. (2014) Spousal caregiving and financial strain among middle-aged and older adults, The International Journal of Aging and Human Development, 79(4): 30221. doi: 10.1177/0091415015574181

    • Search Google Scholar
    • Export Citation
  • Lero, D.S., Keating, N., Fast, J., Joseph, G. and Cook, L. (2007) The interplay of risk factors associated with negative outcomes among family caregivers: a synthesis of the literature, SP-9136-06-0017/00, Strategic Policy Research Directorate, Human Resources and Skills Development Canada.

    • Search Google Scholar
    • Export Citation
  • Longo, C.J., Fitch, M., Grignon, M. and McAndrew, A. (2016) Understanding the full breadth of cancer-related patient costs in Ontario: a qualitative exploration, Supportive Care in Cancer, 24(11): 45418. doi: 10.1007/s00520-016-3293-0

    • Search Google Scholar
    • Export Citation
  • Majhail, N.S., Rizzo, J.D., Hahn, T., Lee, S.J., McCarthy, P.L., Ammi, M., Denzen, E., Drexler, R., Flesch, S., James, H., Omondi, N., Pedersen, T.L., Murphy, E. and Pederson, K. (2013) Pilot study of patient and caregiver out-of-pocket costs of allogeneic hematopoietic cell transplantation, Bone Marrow Transplantation, 48(6): 86571. doi: 10.1038/bmt.2012.248

    • Search Google Scholar
    • Export Citation
  • Mayer, S., Spickschen, J., Stein, K.V., Crevenna, R., Dorner, T.E. and Simon, J. (2019) The societal costs of chronic pain and its determinants: the case of Austria, PLoS ONE, 14(3): e0213889. http://dx.doi.org.uml.idm.oclc.org/10.1371/journal.pone.0213889

    • Search Google Scholar
    • Export Citation
  • Mayston, R., Lloyd-Sherlock, P., Gallardo, S., Wang, H., Huang, Y., Montes de Oca, V., Ezeah, P., Guerra, M., Sosa, A.L., Liu, Z., Uwakwe, R., Guerchet, M.M. and Prince, M. (2017) A journey without maps – understanding the costs of caring for dependent older people in Nigeria, China, Mexico and Peru, PLoS ONE, 12(8): e0182360. doi: 10.1371/journal.pone.0182360

    • Search Google Scholar
    • Export Citation
  • Morgan, S.G., Law, M., Daw, J.R., Abraham, L. and Martin, D. (2015) Estimated cost of universal public coverage of prescription drugs in Canada, Canadian Medical Association Journal, 187(7): 4917. doi: 10.1503/cmaj.141564

    • Search Google Scholar
    • Export Citation
  • Nortey, S.T., Aryeetey, G.C., Aikins, M., Amendah, D. and Nonvignon, J. (2017) Economic burden of family caregiving for elderly population in Southern Ghana: the case of a peri-urban district, International Journal for Equity in Health, 16: 1-9. doi: 10.1186/s12939-016-0511-9

    • Search Google Scholar
    • Export Citation
  • Park, N., Heo, W., Ruiz-Menjivar, J. and Grable, J.E. (2017) Financial hardship, social support, and perceived stress, Journal of Financial Counseling and Planning, 28(2): 32232. doi: 10.1891/1052-3073.28.2.322

    • Search Google Scholar
    • Export Citation
  • Rainville, C., Skufca, L. and Mehegan, L. (2016) Family caregiving and out-of-pocket costs: 2016 report, www.aarp.org/research/topics/care/info-2016/family-caregivers-cost-survey.html?CMP=RDRCT-PPI-CAREGIVING-102416

    • Search Google Scholar
    • Export Citation
  • Shooshtari, S., Duncan, K.A., Roger, K., Fast, J. and Han, J. (2017) Care-related out-of-pocket spending and caregiving consequences: results from a Canadian population-based study, Journal of Family and Economic Issues, 38(3): 40520. doi: 10.1007/s10834-016-9516-1

    • Search Google Scholar
    • Export Citation
  • Sinha, M. (2013) Portrait of caregivers, 2012, Statistics Canada Catalogue No. 89-652-X – No. 001, Ottawa, ON: Statistics Canada, www.statcan.gc.ca/pub/89-652-x/89-652-x2013001-eng.pdf

    • Search Google Scholar
    • Export Citation
  • Statistics Canada (2012) 2012 GSS – Cycle 26 – Caregiving and care receiving user guide.

  • Turcotte, M. (2013) Family caregiving: what are the consequences?, in Statistics Canada (ed) Insights on Canadian Society, Statistics Canada Catalogue No. 75-006-X, Ottawa, ON: Statistics Canada, pp 214, http://publications.gc.ca/site/archivee-archived.html?url=http://publications.gc.ca/collections/collection_2013/statcan/75-006-x/75-006-2013001-6-eng.pdf

    • Search Google Scholar
    • Export Citation
  • Vézina, M. and Turcotte, M. (2010) Caring for a parent who lives far away: the consequences, in Statistics Canada (ed) Canadian Social Trends, Statistics Canada Catalogue No. 11-008-X, Ottawa, ON: Statistics Canada, www.statcan.gc.ca/pub/11-008-x/11-008-x2010001-eng.htm

    • Search Google Scholar
    • Export Citation
  • Williams, A.M., Eby, J.A., Crooks, V.A., Stajduhar, K., Giesbrecht, M., Vuksan, M., Cohen, S.R., Brazil, K. and Allan, D. (2011) Canada’s Compassionate Care Benefit: is it an adequate public health response to addressing the issue of caregiver burden in end-of-life care?, BMC Public Health, 11: 33550. doi: 10.1186/1471-2458-11-335

    • Search Google Scholar
    • Export Citation
  • Williams, A., Wang, L., Duggleby, W., Markle-Reid, M. and Ploeg, J. (2017) Gender and sex differences in carers’ health, burden and work outcomes: Canadian carers of community-dwelling older people with multiple chronic conditions, International Journal of Care and Caring, 1: 33149. doi: 10.1332/239788217X15079062338928

    • Search Google Scholar
    • Export Citation
  • Woo, L.L., Thompson, C.L. and Magadi, H. (2017) Monetary cost of family caregiving for people with dementia in Singapore, Archives of Gerontology and Geriatrics, 71: 5965. doi: 10.1016/j.archger.2017.03.006

    • Search Google Scholar
    • Export Citation
Karen A. Duncan University of Manitoba, Canada

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Shahin Shooshtari University of Manitoba, Canada

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Kerstin Roger University of Manitoba, Canada

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Janet Fast University of Alberta, Canada

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Jing Han University of Manitoba, Canada

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