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Problematising care burden research

Published online by Cambridge University Press:  20 May 2014

MARY ELLEN PURKIS
Affiliation:
School of Nursing, Faculty of Human & Social Development, University of Victoria, Canada.
CHRISTINE CECI*
Affiliation:
Faculty of Nursing, University of Alberta, Edmonton, Canada.
*
Address for correspondence: Christine Ceci, Faculty of Nursing, University of Alberta, Level 3, Edmonton Clinic Health Academy, Edmonton, Alberta, Canada, T6 G 1C9. E-mail: [email protected]

Abstract

In this paper we use Alvesson and Sandberg's strategy of problematisation to analyse the assumptions embedded in the development and use of the concept of ‘care-giver burden’. We do this in order to develop an explanation as to why decades of research into the experience of providing home-based care to a family member with dementia has had little effect in relieving or reducing the ‘burden’ of that care. Though some part of this is undoubtedly political, our analysis suggests that key assumptions of the research limit both knowledge development and intervention effectiveness. Especially problematic are first, an overriding focus on the isolated care-giver–recipient dyad as the appropriate object of inquiry and target of intervention, and second, an absence of an analysis of the materiality of care and care-giving practices. The heterogeneity of care situations, including interrelations among people, technologies, objects, spaces and other organisational worlds, appear in much of the research primarily as methodological problems, variables to be subdued through a more rigorous application of method. The high volume of research and acknowledged low impact of interventions, however, suggests that rethinking the nature of care practices, and how we come to know about them, is necessary if we are to develop and implement strategies that will contribute to better outcomes for people.

Type
Articles
Copyright
Copyright © Cambridge University Press 2014 

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References

Alvesson, M. and Sandberg, J. 2013. Constructing Research Questions: Doing Interesting Research. Sage, London.Google Scholar
Askham, J., Briggs, K., Norman, I. and Redfern, S. 2007. Care at home for people with dementia: as in a total institution? Ageing & Society, 27, 1, 324.CrossRefGoogle Scholar
Canadian Institute for Health Information 2010. Supporting Informal Caregivers – The Heart of Home Care. Canadian Institute for Health Information, Ottawa. Available online at https://secure.cihi.ca/free_products/Caregiver_Distress_AIB_2010_EN.pdf [Accessed June 2012].Google Scholar
Collins, R. 1994. Four Sociological Traditions. Oxford University Press, Oxford.Google Scholar
Egdell, V. 2013. Who cares? Managing obligation and responsibility across the changing landscapes of informal dementia care. Ageing & Society, 33, 5, 888907.Google Scholar
Etters, L., Goodall, D. and Harrison, B. E. 2008. Caregiver burden among dementia patient caregivers: a review of the literature. Journal of the American Academy of Nurse Practitioners, 20, 8, 423–8.Google Scholar
Garfinkel, H. 1967. Studies in Ethnomethodology. Polity, Cambridge.Google Scholar
Gitlin, L. N., Winter, L., Burke, J., Chernett, N., Dennis, M. and Hauck, W. 2008. Tailored activities to manage neuropsychiatric behaviors in persons with dementia and reduce caregiver burden: a randomized pilot study. American Journal of Geriatric Psychiatry, 16, 3, 229–39.CrossRefGoogle ScholarPubMed
Hacking, I. 2006. Making up people. London Review of Books, 28, 16, 17 August.Google Scholar
Harmell, A., Chattillion, E., Roepke, S. and Mausbach, B. 2011. A review of the psychobiology of dementia caregiving: a focus on resilience factors. Current Psychiatry Reports, 13, 3, 219–24.CrossRefGoogle ScholarPubMed
Hoenig, J. and Hamilton, M. 1966. The schizophrenic patient in the community and his effect on the household. International Journal of Social Psychiatry, 12, 3, 165–76.CrossRefGoogle ScholarPubMed
Houlihan, J. 1987. Families caring for frail and demented elderly: a review of selected findings. Family Systems Medicine, 5, 3, 344–56.CrossRefGoogle Scholar
Latour, B. 2004. Why has critique run out of steam? Critical Inquiry, 30, 2, 225–48.Google Scholar
Lilly, M., Robinson, C., Holtzman, S. and Bottorff, J. 2012. Can we move beyond burden and burnout to support the health and wellness of family caregivers to persons with dementia? Evidence from British Columbia, Canada. Health and Social Care in the Community, 20, 1, 103–12.CrossRefGoogle ScholarPubMed
Malonebeach, E., and Zarit, S. 1991. Current research issues in caregiving to the elderly. International Journal of Aging & Human Development, 32, 2, 103–14.Google Scholar
Marvardi, M., Mattioli, P., Spazzafumo, L., Mastriforti, R., Rinaldi, P., Polidori, M., Cherubini, A., Quartesan, R., Bartorelli, L., Bonaiuto, S., Cucinotta, D., Iorio, A., Gallucci, M., Giordano, M., Martorelli, M., et al. 2005. The caregiver burden inventory in evaluating the burden of caregivers of elderly demented patients: results from a multicenter study. Aging Clinical and Experimental Research, 17, 1, 4653.Google Scholar
Mohide, E., Torrance, G., Streiner, D., Pringle, D. and Gilbert, R. 1988. Measuring the wellbeing of family caregivers using the time trade-off technique. Journal of Clinical Epidemiology, 41, 5, 475–82.Google Scholar
Moser, I. 2011. Dementia and the limits to life: anthropological sensibilities, STS interferences, and possibilities for action in care. Science, Technology & Human Values, 36, 5, 704–22.Google Scholar
Ornstein, K. and Gaugler, J. 2012. The problem with ‘problem behaviors’: a systematic review of the association between individual patient behavioral and psychological symptoms and caregiver depression and burden within the dementia patient–caregiver dyad. International Psychogeriatrics, 24, 10, 1536–52.CrossRefGoogle ScholarPubMed
Parker, D., Mills, S. and Abbey, J. 2008. Effectiveness of interventions that assist caregivers to support people with dementia living in the community: a systematic review. International Journal of Evidence-based Healthcare, 6, 2, 137–72.Google ScholarPubMed
Pearlin, L., Mullan, J., Semple, S. and Skaff, M. 1990. Caregiving and the stress process: an overview of concepts and their measures. The Gerontologist, 30, 5, 583–94.Google Scholar
Pols, J. 2012. Care at a Distance: On the Closeness of Technology. Amsterdam University Press, Amsterdam.Google Scholar
Schoenmakers, B., Buntinx, F. and DeLepeleire, J. 2010. Supporting the dementia family caregiver: the effect of home care intervention on general well-being. Aging & Mental Health, 14, 1, 4456.CrossRefGoogle ScholarPubMed
Smits, C., De Lange, J., Dröes, R., Meiland, F., Vernooij-Dassen, M. and Pot, A. 2007. Effects of combined intervention programmes for people with dementia living at home and their caregivers: a systematic review. International Journal of Geriatric Psychiatry, 22, 12, 1181–93.Google Scholar
Sorensen, S., Duberstein, P., Gill, D. and Pinquart, M. 2006. Dementia care: mental health effects, intervention strategies, and clinical implications. Lancet Neurology, 5, 11, 961–73.Google Scholar
Struhkamp, R. 2005. Patient autonomy: a view from the kitchen sink. Medicine, Healthcare and Philosophy, 8, 1, 105–14.Google Scholar
Van Mierlo, L., Meiland, F., Van Der Roest, H. and Dröes, R. 2012. Personalised caregiver support: effectiveness of psychosocial interventions in subgroups of caregivers of people with dementia. International Journal of Geriatric Psychiatry, 27, 1, 114.Google Scholar
Vitaliano, P., Schulz, R., Kiecolt-Glaser, J. and Grant, I. 1997. Research on physiological and physical concomitants of caregiving: where do we go from here? Annals of Behavioral Medicine, 19, 2, 117–23.CrossRefGoogle Scholar
Ward-Griffin, C., Hall, J., DeForge, R., St-Amant, O., Mcwilliam, C., Oudshoorn, A., Forbes, D. and Klosek, M. 2012. Dementia home care resources: how are we managing? Journal of Aging Research (volume 2012), 11 pages, doi:10.1155/2012/590724.Google Scholar
Wijeratne, C. 1997. Review: Pathways to morbidity in carers of dementia sufferers. International Psychogeriatrics, 9, 1, 6979.CrossRefGoogle ScholarPubMed
Zarit, S. and Femia, E. 2008. A future for family care and dementia intervention research? Challenges and strategies. Aging & Mental Health, 12, 1, 513.Google Scholar
Zarit, S. and Reamy, A. 2013. Future directions in family and professional caregiving for the elderly. Gerontology, 59, 2, 152–8.Google Scholar
Zarit, S., Reeves, K. and Bach-Peterson, J. 1980. Relatives of the impaired elderly: correlates of feelings of burden. The Gerontologist, 20, 6, 649–55.Google Scholar
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