Skip to main content
SpringerLink
Log in

‘Expert carers’: An emergent normative model of the caregiver

  • Original Article
  • Published:
Social Theory & Health Aims and scope Submit manuscript

Abstract

Informal caregivers are increasingly recognised as key providers of care to individuals with long-term conditions. However, caregiving itself is a contested domain and one that is increasingly the object of policy and institutional intervention. A recent development is that of providing formal training to caregivers, to better equip them to carry out what is perceived to be a new and demanding role. A number of such interventions have been developed and evaluated, with mixed results. At the start of a process evaluation of one such intervention, specifically for stroke caregivers, we sought to better understand what implicit model of the caregiver underpins training interventions and how this model might be accounted for. In this article, we aim to address these questions by examining models of the ‘caregiver’ present in different bodies of literature and their relevance for caregiver training. We consider the extent to which this points to the emergence of a normative model of the caregiver. We propose that training caregivers serves to create expert or semi-professional caregivers, through the transmission of technical knowledge and practices from health professional to lay person. We also consider the wider implications this has for informal caregivers and caregiving practices.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Similar content being viewed by others

References

  • Allen, D. (2000) Negotiating the role of expert carers on an adult hospital ward. Sociology of Health & Illness 22 (2): 149–171.

    Article  Google Scholar 

  • Arksey, H. (2002) Rationed care: Assessing the service needs of informal carers in English social services authorities. Journal of Social Policy 31 (1): 81–101.

    Article  Google Scholar 

  • Baert Ilse, I., Feys, H., de Wit, L., Putman, K. and de Weerdt, W. (2008) Stroke caregivers’ strain: Prevalence and determinants in the first six months after stroke. Disability and Rehabilitation 30 (7): 523–530.

    Article  Google Scholar 

  • Brereton, L., Carroll, C. and Barnston, S. (2007) Interventions for adult family carers of people who have had a stroke: A systematic review. Clinical Rehabilitation 21 (10): 867–884.

    Article  Google Scholar 

  • Brereton, L. and Nolan, M. (2000) Preparation for family care-giving-the neglected dimension. Journal of Clinical Nursing 9 (4): 498–506.

    Article  Google Scholar 

  • Brodaty, H. and Luscombe, G. (1998) Psychological morbidity in caregivers is associated with depression in patients with dementia. Alzheimer Disease Association of Disorders 12 (2): 62–70.

    Article  Google Scholar 

  • Carers UK. (2011) What is caring? http://www.carersuk.org/about-us/what-is-caring, accessed 12 January 2012.

  • Chatoo, S. and Ahmad, W.I.U. (2008) The moral economy of selfhood and caring: Negotiating boundaries of personal. Sociology of Health & Illness 30 (4): 550–564.

    Article  Google Scholar 

  • Cohen, L. (1998) No Aging in India. Alzheimer's, the Bad Family, and Other Modern Things. California: University of California Press.

    Book  Google Scholar 

  • Department of Health. (1989) Caring for People: Community Care in the Next Decade and Beyond. London: HMSO.

  • Department of Health. (1995) Carers (Recognition and Services) Act 1995. London: HMSO.

  • Department of Health. (2001) The Expert Patient: A New Approach to Chronic Disease Management in the 21st Century. London: The Stationery Office.

  • Department of Health. (2004) Carers (Equal Opportunities) Act 2004. London: HMSO.

  • Department of Health. (2007) The National Stroke Strategy. London: Crown.

  • Department of Health. (2008a) Carers at the Heart of 21st Century Families and Communities: A Caring System on Your Side, a Life of Your Own. London: Crown.

  • Department of Health. (2008b) Confidence in Caring: A Framework for Best Practice. London: Crown.

  • Department of Health and Social Security. (1981) Growing Older. London: HMSO.

  • Dewey, H. et al (2002) Informal care for stroke survivors: Results from the North East Melbourne Stroke Incidence Study (NEMESIS). Stroke 33 (4): 1028–1033, DOI: 10.1161/01.STR.0000013067.24300.BO.

    Article  Google Scholar 

  • Edgar, A. (2005) The expert patient: Illness as practice. Medicine, Health Care and Philosophy 8 (2): 165–171.

    Article  Google Scholar 

  • Elliott, A., Burgio, L. and DeCoster, J. (2010) Enhancing caregiver health: Findings from the resources for enhancing Alzheimer's caregiver health II intervention. JAGS 58 (1): 30–37.

    Article  Google Scholar 

  • Ellis, G., Mant, J., Langhorne, P., Dennis, M. and Winner, S. (2010) Stroke liaison workers for stroke patients and carers: An individual patient data meta-analysis (Review). Cochrane Database of Systematic Reviews (5), Art No: CD005066. DOI: 10.1002/1465/858.CD005066.pub2.

  • Finch, F. (1990) The politics of community care. In: C. Ungerson (ed.) Gender and Caring: Work and Welfare in Britain and Scandinavia. New York: Harvester Wheatsheaf.

    Google Scholar 

  • Fine, M. and Glendinning, C. (2005) Dependence, independence or inter-dependence? Revisiting the concepts of ‘care’ and ‘dependency’. Ageing & Society 25 (4): 601–621.

    Article  Google Scholar 

  • Forster, A. (2005) Caregiver burden in stroke. Current Medical Literature 9 (1): 127–131.

    Google Scholar 

  • Forster, A. et al (2008) Training Caregivers after Stroke (TRACS), Protocol Version 1. 21 August 2008.

  • Foucault, M. (1973) The Birth of the Clinic: An Archaeology of Medical Perception. London: Tavistock Publications.

    Google Scholar 

  • Foucault, M. (1988) Technologies of the self. In: L. Martin, H. Gutman and P. Hutton (eds.) Technologies of the Self – A Seminar with Michel Foucault. Amherst, MA: University of Massachusetts Press.

    Google Scholar 

  • Garand, L., Dew, M.A., Eazor, L.R., DeKosky, S.T. and Reynolds, C.F. (2005) Caregiving burden and psychiatric morbidity in spouses of persons with mild cognitive impairment. International Journal of Geriatric Psychiatry 20 (6): 512–522.

    Article  Google Scholar 

  • Griffiths Sir, R. (1988) Community Care: Agenda for Action. London: HMSO.

    Google Scholar 

  • Good, B.J. (1994) Medicine, Rationality, and Experience. Cambridge: Cambridge University Press.

    Google Scholar 

  • Greenwood, N., Mackenzie, A., Cloud, G.C. and Wilson, N. (2009) Informal primary carers of stroke survivors living at home-challenges, satisfactions and coping: A systematic review of qualitative studies. Disability and Rehabilitation 31 (5): 337–351.

    Article  Google Scholar 

  • Han, B. and Haley, W.E. (1999) Family caregiving for patients with stroke – Review and analysis. Stroke 30 (7): 1478–1485.

    Article  Google Scholar 

  • Heaton, J. (1999) The gaze and visibility of the carer: A Foucauldian analysis of the discourse of informal care. Sociology of Health & Illness 21 (6): 759–777.

    Article  Google Scholar 

  • Heuschmann, P.U., Grieve, A.P., Toschke, A.M., Rudd, A.R. and Wolfe, C.D.A. (2008) Ethnic group disparities in 10-year trends in stroke incidence and vascular risk factors. Stroke 39 (8): 2204–2210.

    Article  Google Scholar 

  • Hirst, M. (2001) Trends in informal care in Britain. Health and Social Care in the Community 9 (6): 348–357.

    Article  Google Scholar 

  • Holroyd, E. (2001) Hong Kong Chinese daughters’ intergenerational caregiving obligations: A cultural model approach. Social Science & Medicine 53 (9): 1125–1134.

    Article  Google Scholar 

  • Intercollegiate Stroke Working Party. (2004) National Clinical Guidelines for Stroke, 2nd edn. London: Royal College of Physicians.

  • Intercollegiate Stroke Working Party. (2008) National Clinical Guideline for Stroke, 3rd edn. London: Royal College of Physicians.

  • Intercollegiate Stroke Working Party. (2009) National Sentinel Stroke Audit Phase II (clinical audit) 2008. Report for England, Wales and Northern Ireland. London: Royal College of Physicians.

  • Kalra, L. et al (2004) Training carers of stroke patients: Randomised controlled trial. British Medical Journal 328 (7448): 1099–1104.

    Article  Google Scholar 

  • Kleinman, A. and Hanna, B. (2008) Catastrophe, caregiving and today's biomedicine. Biosocieties 3 (3): 287–310.

    Article  Google Scholar 

  • Langhorne, P. et al (2005) Early supported discharge services for stroke patients: A meta-analysis of individual patients’ data. The Lancet 365 (9458): 501–506.

    Article  Google Scholar 

  • Lewis, G. (2000) A Failure of Treatment. Oxford: Oxford University Press.

    Google Scholar 

  • McKevitt, C., Redfern, J., Mold, F. and Wolfe, C. (2004) Qualitative studies of stroke: A systematic review. Stroke 35 (6): 1499–1505.

    Article  Google Scholar 

  • Medical Research Council. (2008) Developing and evaluating complex interventions: New guidance, www.mrc.ac.uk/complexinterventionsguidance, accessed 30 November 2011.

  • Patel, A., Knapp, M., Evans, A., Perez, I. and Kalra, L. (2004) Training care givers of stroke patients: Economic evaluation. British Medical Journal 328 (7448): 1102–1108.

    Article  Google Scholar 

  • Pickard, S. (2010) The ‘good carer’: Moral practices in late modernity. Sociology 44 (3): 471–487.

    Article  Google Scholar 

  • Rigby, H., Gubitz, G. and Phillips, S. (2009) A systematic review of caregiver burden following stroke. International Journal of Stroke 4 (4): 285–292.

    Article  Google Scholar 

  • Rivera, P., Elliot, T., Berry, J. and Grant, J. (2008) problem-solving training for family caregivers of persons with traumatic brain injuries: A randomised controlled trial. Archives of Physical Medicine and Rehabilitation 89 (5): 931–941.

    Article  Google Scholar 

  • Schulz, R., Czaja, S., Lustig, A., Zdaniuk, B., Martire, L. and Perdomo, D. (2009) Improving the quality of life of caregivers of persons with spinal cord injury: A randomised controlled trial. Rehabilitation Psychology 54 (1): 1–15.

    Article  Google Scholar 

  • Shyu, Y.-L., Kuo, L.-M., Chen, M.-C. and Chen, S.-T. (2010) A clinical trial of an individualised intervention programme for family caregivers of older stroke victims in Taiwan. Journal of Clinical Nursing 19 (11–12): 1675–1685.

    Article  Google Scholar 

  • Simon, C. and Kendrick, T. (2002) Community provision for informal live-in carers of stroke patients. British Journal of Community Nursing 7 (6): 292–298.

    Article  Google Scholar 

  • Taylor, D. and Bury, M. (2007) Chronic illness, expert patients and care transition. Sociology of Health and Illness 29 (1): 27–45.

    Article  Google Scholar 

  • Traphaghan, J.W. (2007) Moral discourse and old-age disability in Japan. In: B. Ingstad and S.R. Whyte (eds.) Disability in Local and Global Worlds. Berkeley, CA: University of California Press.

    Google Scholar 

  • Turner, V. (1988) The Anthropology of Performance. New York: PAJ Publications.

    Google Scholar 

  • Twigg, J. (1989) Models of carers: How do social care agencies conceptualise their relationship with informal carers? Journal of Social Policy 18 (1): 53–66.

    Article  Google Scholar 

  • Van der Geest, S. (2002) Respect and reciprocity: Care of elderly people in rural Ghana. Journal of Cross-cultural Gerontology 17 (1): 3–31.

    Article  Google Scholar 

  • Visser-Meily, A., van Heugten, C., Post, M., Schepers, V. and Lindeman, E. (2005) Intervention studies for caregivers of stroke survivors: A critical review. Patient Education and Counseling 56 (3): 257–267.

    Article  Google Scholar 

  • Wellwood, I., Dennis, M.S. and Warlow, C.P. (1995) Patients’ and carers’ satisfaction with acute stroke management. Age and Ageing 24 (6): 519–524.

    Article  Google Scholar 

  • Wilson, T., Buck, D. and Ham, C. (2005) Rising to the challenge: Will the NHS support people with long term conditions? British Medical Journal 330 (7492): 657–661.

    Article  Google Scholar 

  • Winch, S. (2006) Constructing a morality of caring: Codes and values in Australian carer discourse. Nursing Ethics 13 (1): 5–16.

    Article  Google Scholar 

  • World Health Organisation. (2009) Stroke, cerebrovascular accident, http://www.who.int/topics/cerebrovascular_accident/en, accessed 1 November 2010.

Download references

Author information

Authors and Affiliations

  1. Department of Primary Care and Public Health Sciences, Division of Health and Social Care Research, King's College London, 7th Floor Capital House, 42 Weston Street, London, SE1 3QD, UK

    Euan Sadler & Christopher McKevitt

Authors
  1. Euan Sadler
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Christopher McKevitt
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Euan Sadler.

Rights and permissions

Reprints and permissions

About this article

Cite this article

Sadler, E., McKevitt, C. ‘Expert carers’: An emergent normative model of the caregiver. Soc Theory Health 11, 40–58 (2013). https://doi.org/10.1057/sth.2012.17

Download citation

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1057/sth.2012.17

Keywords

Search

Navigation