Problematic caregiving activities among family carers of older adults with disabilities

View author details View Less
  • 1 University of British Columbia, Canada
  • | 2 Université Laval, Canada
  • | 3 Université de Montréal, Canada
  • | 4 Simon Fraser University, Canada
  • | 5 Centre de recherche de l’Institut universitaire de gériatrie de Montréal, Canada
Restricted access
Get eTOC alerts
Rights and permissions Cite this article

Family carers of older adults with disability often both experience stress that may affect their ability to provide care, and find some caregiving activities differentially challenging. The objectives of this research are to identify the caregiving activities that are most problematic to carers and to explore the reasons why carers found these activities challenging. Participants were past or current carers aged 19 years and older. Using an explanatory sequential mixed-methods approach, data were collected through a survey and open-ended interviews. Thematic analysis revealed that an activity was likely to be more problematic if it had to be coordinated with other caregiving needs or where a care recipient’s disability was severe.

  • Arber, S. and Venn, S. (2011) Caregiving at night: understanding the impact on carers, Journal of Aging Studies, 25(2): 155165. doi: 10.1016/j.jaging.2010.08.020

    • Search Google Scholar
    • Export Citation
  • Armstrong-Esther, C., Hagen, B., Sandilands, M., Williams, R. and Smith, C. (2005) A longitudinal study of home care clients and their informal careers, British Journal of Community Nursing, 10(6): 28491. doi: 10.12968/bjcn.2005.10.6.18169

    • Search Google Scholar
    • Export Citation
  • Beach, S.R. and Schulz, R. (2017) Family caregiver factors associated with unmet needs for care of older adults, Journal of the American Geriatrics Society, 65(3): 5606. doi: 10.1111/jgs.14547

    • Search Google Scholar
    • Export Citation
  • Beaudoin, M., Routhier, F., Atoyebi, O., Mortenson, W.B., Auger, C., Demers, L., Wister, A. and Plante, M. (2020) Interviews with family caregivers of older adults: their experiences of care and the integration of assistive technology in care, Technology and Disability, 32(3): 199209. doi: 10.3233/TAD-190253

    • Search Google Scholar
    • Export Citation
  • Black, S.E., Gauthier, S., Dalziel, W., Keren, R., Correia, J., Hew, H. and Binder, C. (2010) Canadian Alzheimer’s disease caregiver survey: baby-boomer caregivers and burden of care, International Journal of Geriatric Psychiatry, 25(8): 80713. doi: 10.1002/gps.2421

    • Search Google Scholar
    • Export Citation
  • Bottari, C., Dutil, É., Auger, C. and Lamoureux, J. (2020) Structural validity and internal consistency of an ecological observation-based assessment, the activities of daily living profile, Australian Occupational Therapy Journal. doi: 67(5): 407-416. doi: 10.1111/1440-1630.12654

    • Search Google Scholar
    • Export Citation
  • Braun, V. and Clarke, V. (2006) Using thematic analysis in psychology, Qualitative Research in Psychology, 3(2): 77101. doi: 10.1191/1478088706qp063oa

    • Search Google Scholar
    • Export Citation
  • Buckwalter, K.C. and Davis, L.L. (2011) Elder caregiving in rural communities, in R.C. Talley, K. Chwalisz and K.C. Buckwater (eds) Rural Caregiving in the United States, New York: Springer, pp 3346. doi: 10.1007/978-1-4614-0302-9_3

    • Search Google Scholar
    • Export Citation
  • Chappell, N.L. (2011) Population Aging and the Evolving Care Needs of Older Canadians: An Overview of the Policy Challenges, IRPP Study 21, Montreal: Institute for Research on Public Policy, http://irpp.org/research-studies/study-no21/

    • Search Google Scholar
    • Export Citation
  • Cunningham, C., Wensley, R., Blacker, D., Bache, J. and Stonier, C. (2012) Occupational therapy to facilitate physical activity and enhance quality of life for individuals with complex neurodisability, British Journal of Occupational Therapy, 75(2): 10610. doi: 10.4276/030802212X13286281651234

    • Search Google Scholar
    • Export Citation
  • Ducharme, F., Kergoat, M.J., Coulombe, R., Lvesque, L., Antoine, P. and Pasquier, F. (2014) Unmet support needs of early-onset dementia family caregivers: a mixed-design study, BMC Nursing, 13(1): 49. doi: 10.1186/s12912-014-0049-3

    • Search Google Scholar
    • Export Citation
  • Dutil, É., Bottari, C. and Auger, C. (2017) Test–retest reliability of a measure of independence in everyday activities: the ADL profile, Occupational Therapy International. doi: 10.1155/2017/3014579

    • Search Google Scholar
    • Export Citation
  • Fast, J. (2015) Caregiving for Older Adults with Disabilities: Present Costs, Future Challenges, IRPP Study 58, Montreal: Institute for Research on Public Policy, http://irpp.org/research-studies/study-no58/

    • Search Google Scholar
    • Export Citation
  • Fielding, N.G. (2012) Triangulation and mixed methods designs, Journal of Mixed Methods Research, 6(2): 12436. doi: 10.1177/1558689812437101

    • Search Google Scholar
    • Export Citation
  • Gan, C., Gargaro, J., Brandys, C., Gerber, G. and Boschen, K. (2010) Family caregivers’ support needs after brain injury: a synthesis of perspectives from caregivers, programs, and researchers, NeuroRehabilitation, 27(1): 518. doi: 10.3233/NRE-2010-0577

    • Search Google Scholar
    • Export Citation
  • Gentles, S.J., Charles, C., Ploeg, J. and Ann McKibbon, K. (2015) Sampling in qualitative research: insights from an overview of the methods literature, Qualitative Report, 20(11): 177289.

    • Search Google Scholar
    • Export Citation
  • Government of Canada (2021) Programs and services for seniors, www.canada.ca/en/employment-social-development/campaigns/seniors.html

  • Guay, C., Auger, C., Demers, L., Mortenson, W.B., Miller, W.C., Gélinas-Bronsard, D. and Ahmed, S. (2017) Components and outcomes of Internet-based interventions for caregivers of older adults: systematic review, Journal of Medical Internet Research, 19(9): 118. doi: 10.2196/jmir.7896

    • Search Google Scholar
    • Export Citation
  • Henry, S., Abou-Zahra, S. and Brewer, J. (2014) The role of accessibility in a universal web, in Proceedings of the 11th Web for All Conference, Seoul: Association for Computing Machinery, pp 14, https://dspace.mit.edu/bitstream/handle/1721.1/88013/SLHenry-W4A2014-MIT.pdf?sequence=1&isAllowed=y. doi: 10.1145/2596695.2596719

    • Search Google Scholar
    • Export Citation
  • Imrie, R. (2012) Universalism, universal design and equitable access to the built environment, Disability and Rehabilitation, 34(10): 87382. doi: 10.3109/09638288.2011.624250

    • Search Google Scholar
    • Export Citation
  • Jesus, I.T.M., Orlandi, A.A. and Zazzetta, M.S. (2018) Burden, profile and care: caregivers of socially vulnerable elderly persons, Revista Brasileira de Geriatria e Gerontologia, 21(2): 194204. doi: 10.1590/1981-22562018021.170155

    • Search Google Scholar
    • Export Citation
  • Kokorelias, K.M., Lu, F.K.T., Santos, J.R., Xu, Y., Leung, R. and Cameron, J.I. (2020) Caregiving is a full-time job impacting stroke caregivers’ health and well-being: a qualitative meta-synthesis, Health and Social Care in the Community, 28(2): 32540. doi: 10.1111/hsc.12895

    • Search Google Scholar
    • Export Citation
  • Koskas, P., Henry-Feugeas, M.C., Feugeas, J.P., Poissonnet, A., Pons-Peyneau, C., Wolmark, Y. and Drunat, O. (2014) The Lawton instrumental activities daily living/activities daily living scales: a sensitive test to Alzheimer disease in community-dwelling elderly people?, Journal of Geriatric Psychiatry and Neurology, 27(2): 8593. doi: 10.1177/0891988714522694

    • Search Google Scholar
    • Export Citation
  • Leiknes, I., Tysnes, O.B., Aarsland, D. and Larsen, J.P. (2010) Caregiver distress associated with neuropsychiatric problems in patients with early Parkinson’s disease: the Norwegian ParkWest study, Acta Neurologica Scandinavica, 122(6): 41824. doi: 10.1111/j.1600-0404.2010.01332.x

    • Search Google Scholar
    • Export Citation
  • Lin, C.Y., Shih, P.Y. and Ku, L.J.E. (2019) Activities of daily living function and neuropsychiatric symptoms of people with dementia and caregiver burden: the mediating role of caregiving hours, Archives of Gerontology and Geriatrics, 81: 2530. doi: 10.1016/j.archger.2018.11.009

    • Search Google Scholar
    • Export Citation
  • Miesen, B. (2010) Care-giving in dementia: contours of a curriculum, Dementia, 9(4): 47389. doi: 10.1177/1471301210381680

  • Mortenson, W.B., Demers, L., Fuhrer, M.J., Jutai, J.W., Lenker, J. and DeRuyter, F. (2012) How assistive technology use by individuals with disabilities impacts their caregivers: a systematic review of the research evidence, American Journal of Physical Medicine & Rehabilitation/Association of Academic Physiatrists, 91(11): 98498. doi: 10.1097/PHM.0b013e318269eceb

    • Search Google Scholar
    • Export Citation
  • Mortenson, W.B., Demers, L., Fuhrer, M.J., Jutai, J.W., Lenker, J. and De Ruyter, F. (2015) Development and preliminary evaluation of the Caregiver Assistive Technology Outcome Measure, Journal of Rehabilitation Medicine, 47(5): 41218. doi:10.2340/16501977-1952

    • Search Google Scholar
    • Export Citation
  • Mortenson, W.B., Demers, L., Rushton, P.W., Auger, C., Routhier, F. and Miller, W.C. (2017) Psychometric properties of a Power Mobility Caregiver Assistive Technology Outcome Measure, PLoS ONE, 12(6):e0178554. doi: 10.1371/journal.pone.0178554

    • Search Google Scholar
    • Export Citation
  • Murray, C.J.L. et al. (2015) Global, regional, and national disability-adjusted life years (DALYs) for 306 diseases and injuries and healthy life expectancy (HALE) for 188 countries, 1990–2013: quantifying the epidemiological transition, The Lancet, 386(10009): 214591. doi: 10.1016/S0140-6736(15)61340-X

    • Search Google Scholar
    • Export Citation
  • O’Brien, B.C., Harris, I.B., Beckman, T.J., Reed, D.A. and Cook, D.A. (2014) Standards for reporting qualitative research, Academic Medicine, 89(9): 124551. doi: 10.1097/ACM.0000000000000388

    • Search Google Scholar
    • Export Citation
  • O’Cathain, A., Murphy, E. and Nicholl, J. (2008) The quality of mixed methods studies in health services research, Journal of Health Services Research and Policy, 13(2): 928. doi: 10.1258/jhsrp.2007.007074

    • Search Google Scholar
    • Export Citation
  • Owren, T. (2019) Nine rules of engagement: reflections on reflexivity, Qualitative Report, 24(2): 22841.

  • Park, M., Sung, M., Kim, S.K., Kim, S. and Lee, D.Y. (2015) Multidimensional determinants of family caregiver burden in Alzheimer’s disease, International Psychogeriatrics, 27(8): 135564. doi: 10.1017/S1041610215000460

    • Search Google Scholar
    • Export Citation
  • Pickard, L. (2015) A growing care gap? The supply of unpaid care for older people by their adult children in England to 2032, Ageing and Society, 35(1): 96123. doi: 10.1017/S0144686X13000512

    • Search Google Scholar
    • Export Citation
  • Ploeg, J., Matthew-Maich, N., Fraser, K., Dufour, S., McAiney, C., Kaasalainen, S., Markle-Reid, M., Upshur, R., Cleghorn, L. and Emili, A. (2017) Managing multiple chronic conditions in the community: a Canadian qualitative study of the experiences of older adults, family caregivers and healthcare providers, BMC Geriatrics, 17(40): 115. doi: 10.1186/s12877-017-0431-6

    • Search Google Scholar
    • Export Citation
  • Reinhard, S.C., Levine, C. and Samis, S. (2014) Family Caregivers Providing Complex Chronic Care to Their Spouses, Washington, DC: AARP Public Policy Institute.

    • Search Google Scholar
    • Export Citation
  • Reinhard, S.C., Feinberg, L.F., Choula, R. and Houser, A. (2015) Valuing the invaluable: 2015 update, Insight on the Issues, 104: 8998.

    • Search Google Scholar
    • Export Citation
  • Rosenthal, C.J., Martin-Matthews, A. and Keefe, J.M. (2007) Care management and care provision for older relatives amongst employed informal care-givers, Ageing and Society, 27(5): 75578. doi: 10.1017/S0144686X07005995

    • Search Google Scholar
    • Export Citation
  • Rush, S.G., Williamson, G.M., Miller, L.S. and Schulz, R. (2011) Depression and quality of informal care: a longitudinal investigation of caregiving stressors, Psychology and Aging, 26(3): 58491, https://doi.org/10.1161/CIRCULATIONAHA.110.956839. doi: 10.1037/a0022263

    • Search Google Scholar
    • Export Citation
  • Sinha, M. (2013) Spotlight on Canadians: results from the General Social Survey. Portrait of caregivers 2012, Statistics Canada, 89: 121, Ottawa: Statistics Canada, Catalogue no. 89-652-X—No. 001. http://healthcareathome.ca/mh/en/Documents/Portrait%20of%20Caregivers%202012.pdf

    • Search Google Scholar
    • Export Citation
  • Small, J.A., Gutman, G., Makela, S. and Hillhouse, B. (2003) Effectiveness of communication strategies used by caregivers of persons with Alzheimer’s disease during activities of daily living, Journal of Speech, Language, and Hearing Research: JSLHR, 46(2): 35367, www.ncbi.nlm.nih.gov/pubmed/14700377. doi: 10.1044/1092-4388(2003/028)

    • Search Google Scholar
    • Export Citation
  • Statistics Canada (2013) Disability in Canada: initial findings from the Canadian Survey on Disability, www150.statcan.gc.ca/n1/en/pub/89-654-x/89-654-x2013002-eng.pdf?st=JUr8vhb7.

    • Search Google Scholar
    • Export Citation
  • Turcotte, M. (2013) Family Caregiving: What are the Consequences?, Ottawa: Statistics Canada, Catalogue no. 75-006-X. www.statcan.gc.ca/pub/75-006-x/2013001/article/11858-eng.pdf

    • Search Google Scholar
    • Export Citation
  • Verbakel, E., Metzelthin, S.F. and Kempen, G.I.J.M. (2018) Caregiving to older adults: determinants of informal caregivers’ subjective well-being and formal and informal support as alleviating conditions, Journals of Gerontology – Series B Psychological Sciences and Social Sciences, 73(6): 1099111. doi: 10.1093/geronb/gbw047

    • Search Google Scholar
    • Export Citation
  • Watson, B., Aizawa, L.D., Savundranayagam, M.Y. and Orange, J.B. (2012) Links among communication, dementia and caregiver burden, Canadian Journal of Speech-Language Pathology and Audiology, 36(4): 27683.

    • Search Google Scholar
    • Export Citation
  • Williams, A.M., Wang, L. and Kitchen, P. (2014) Differential impacts of care-giving across three caregiver groups in Canada: end-of-life care, long-term care and short-term care, Health and Social Care in the Community, 22(2): 18796. doi: 10.1111/hsc.12075

    • Search Google Scholar
    • Export Citation
  • Wilson, R., Rochon, E., Mihailidis, A. and Leonard, C. (2012) Examining success of communication strategies with Alzheimer’s disease during an activity of daily living, Journal of Speech, Language, and Hearing Research, 55(2): 32841. doi: 10.1044/1092-4388(2011/10-0206)

    • Search Google Scholar
    • Export Citation
  • 1 University of British Columbia, Canada
  • | 2 Université Laval, Canada
  • | 3 Université de Montréal, Canada
  • | 4 Simon Fraser University, Canada
  • | 5 Centre de recherche de l’Institut universitaire de gériatrie de Montréal, Canada

Content Metrics

May 2022 onwards Past Year Past 30 Days
Abstract Views 180 180 50
Full Text Views 12 12 0
PDF Downloads 7 7 0

Altmetrics

Dimensions