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Reconsidering the term ‘carer’: a critique of the universal adoption of the term ‘carer’

Published online by Cambridge University Press:  22 November 2010

VICTORIA MOLYNEAUX ,
SARAH BUTCHARD ,
JANE SIMPSON  and
CRAIG MURRAY
VICTORIA MOLYNEAUX*
Affiliation:
Division of Health Research, Lancaster University, Lancaster, UK. Mersey Care National Health Service Trust, Liverpool, UK.
SARAH BUTCHARD
Affiliation:
Mersey Care National Health Service Trust, Liverpool, UK.
JANE SIMPSON
Affiliation:
Division of Health Research, Lancaster University, Lancaster, UK.
CRAIG MURRAY
Affiliation:
Division of Health Research, Lancaster University, Lancaster, UK.
*
Address for correspondence: Victoria Molyneaux, Clinical Psychology Department, Oak House, University Hospital Aintree, Longmoor Lane, Liverpool L9 7AL, UK E-mail: [email protected]
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Abstract

This critique of the term ‘carer’ argues that, although developed as a result of well-intentioned and socially-engaged research, it fails the people with whom it is most concerned, that is ‘carers’ and those who are cared for. The paper considers the historical and political development of the term ‘carer’ before examining research in various ‘carer’-related settings in the United Kingdom, namely mental health, physical and intellectual impairment, cancer and palliative care and older adulthood and dementia. The article concludes that the term ‘carer’ is ineffective and that its continued use should be reconsidered. This conclusion is based on the consistent failure of the term ‘carer’ as a recognisable and valid description of the relationship between ‘carers’ and those for whom they care. Furthermore, use of the term may imply burden and therefore devalue the individual who is cared for and in this way polarises two individuals who would otherwise work together. Consequently, this commentary suggests that descriptions of the caring relationship that focus on the relationship from which it arose would be both more acceptable and useful to those it concerns. Furthermore, a more accessible term may increase uptake of support services currently aimed at ‘carers’, therefore inadvertently meeting the original aims of the term, that is, to increase support for ‘carers’.

Keywords

carersterminologycritique
Type
Submitted Articles
Information
Ageing & Society , Volume 31 , Issue 3: Methodologies for Ageing Populations , April 2011 , pp. 422 - 437
Copyright
Copyright © Cambridge University Press 2010

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References

Adams, T. 2000. The discursive construction of identity by community psychiatric nurses and family members caring for people with dementia. Journal of Advanced Nursing, 32, 4, 791–8.CrossRefGoogle ScholarPubMed
Arksey, H., Heaton, J. and Sloper, P. 1998. Carers tell it like it is. Health Service Journal, 108, 1, 32–3.Google ScholarPubMed
Barnes, M. 1997. Care, Communities and Citizens. Longman, Harlow, UK.Google Scholar
Calderbank, R. 2000. Abuse and disabled people: vulnerability or social indifference? Disability and Society, 15, 3, 521–34.CrossRefGoogle Scholar
Cleary, M., Freeman, A. and Walter, G. 2006. Carer participation in mental health service delivery. International Journal of Mental Health Nursing, 15, 3, 189–94.CrossRefGoogle ScholarPubMed
Department of Health 1995. Carers (Recognition and Services) Act 1995. Department of Health, London.Google Scholar
Department of Health 2000. Carers and Disabled Children Act 2000. Department of Health, London.Google Scholar
Department of Health 2004. Carers (Equal Opportunities) Act 2004. Department of Health, London.Google Scholar
Department of Health 2008. Carers at the Heart of 21st Century Families and Communities: A Caring System on Your Side, A Life of Your Own. Department of Health, London.Google Scholar
Eayrs, C. B., Ellis, N. and Jones, R. S. P. 1993. Which label? An investigation into the effects of terminology on public perceptions of and attitudes towards people with learning difficulties. Disability, Handicap and Society, 8, 2, 111–27.CrossRefGoogle Scholar
Fine, M. 2004. Renewing the social vision of care. Australian Journal of Social Issues, 39, 3, 217–32.CrossRefGoogle Scholar
Fine, M. and Glendinning, C. 2005. Dependence, independence or inter-dependence? Revisiting the concepts of ‘care’ and ‘dependency’. Ageing & Society, 25, 4, 601–21.CrossRefGoogle Scholar
Foster, S. 2005. Supporting carers in practice: book review. Health and Social Care in the Community, 13, 4, 396–7.Google Scholar
Guberman, N., Nicholas, E., Nolan, M., Rembicki, D., Lundh, U. and Keefe, J. 2003. Impacts on practitioners of using research-based carer assessment tools: experiences from the UK, Canada and Sweden, with insights from Australia. Health and Social Care in the Community, 11, 4, 345–55.CrossRefGoogle ScholarPubMed
Gunaratnam, Y. 1997. Breaking the silence: black and ethnic minority carers and service provision. In Bornat, J., Johnson, J., Pereira, C., Pilgrim, D. and Williams, F. (eds), Community Care: A Reader. Macmillan, London, 114–23.CrossRefGoogle Scholar
Harding, R. and Higginson, I. 2001. Working with ambivalence: informal caregivers of patients at the end of life. Support Care Cancer, 9, 8, 642–5.CrossRefGoogle ScholarPubMed
Harding, R. and Leam, C. 2005. Clinical notes for informal carers in palliative care: recommendations from a random patient file audit. Palliative Medicine, 19, 8, 639–42.CrossRefGoogle ScholarPubMed
Heaton, J. 1999. The gaze and visibility of the carer: a Foucauldian analysis of the discourse of informal care. Sociology of Health and Illness, 21, 6, 759–77.CrossRefGoogle Scholar
Henderson, J. 2001. ‘He's not my carer – he's my husband’: personal and policy constructions of care in mental health. Journal of Social Work Practice, 15, 2, 149–59.CrossRefGoogle Scholar
Higginson, I., Wade, A. and McCarthy, M. 1990. Palliative care: views of patients and their families. British Medical Journal, 301, 277–81.CrossRefGoogle ScholarPubMed
Karp, D. A. and Tanarugsachock, V. 2000. Mental illness, caregiving, and emotion management. Qualitative Health Research, 10, 1, 6–25.CrossRefGoogle ScholarPubMed
Keith, L. 1992. Who cares wins? Women, caring and disability. Disability, Handicap and Society, 7, 2, 167–75.CrossRefGoogle Scholar
Kneebone, I. and Martin, P. 2003. Coping and caregivers of people with dementia. British Journal of Health Psychology, 8, 1, 1–17.CrossRefGoogle ScholarPubMed
Kramer, B. and Lambert, J. 1999. Caregiving as a life course transition among older husbands: a prospective study. The Gerontologist, 39, 6, 658–67.CrossRefGoogle ScholarPubMed
Kutner, G. 2001. Caregiver Identification Study. American Association of Retired Persons, Washington DC.Google Scholar
Lawthom, R. and Goodley, D. 2005. Towards and empowering vision of disability. The Psychologist, 18, 7, 423–5.Google Scholar
Mackenzie, A. and Holroyd, E. 1996. An exploration of the carers' perceptions of caregiving and caring responsibilities in Chinese families. International Journal of Nursing Studies, 33, 1, 1–12.CrossRefGoogle ScholarPubMed
McKee, K. J., Philp, I., Lamura, G., Prouskas, C., Berg, B., Krevers, B., Spazzafumo, L., Bien, B., Parker, C., Nolan, M. R. and Szczerbinska, K. 2003. The COPE index: a first stage assessment of negative impact, positive value and quality of support of caregiving in informal carers of older people. Aging and Mental Health, 7, 1, 39–52.CrossRefGoogle ScholarPubMed
Montgomery, R. 1999. The family role in the context of long-term care. Journal of Aging and Health, 11, 3, 383–416.CrossRefGoogle ScholarPubMed
Morris, J. 1991. Us and them? Feminist research, community care and disability. Critical Social Policy, 11, 3, 22–39.CrossRefGoogle Scholar
Morris, J. 1993. Independent Lives. Macmillan, Basingstoke, UK.CrossRefGoogle Scholar
Morris, S. M. and Thomas, C. 2001. The carer's place in the cancer situation: where does the carer stand in the medical setting? European Journal of Cancer Care, 10, 2, 87–95.CrossRefGoogle ScholarPubMed
Netto, G. 1998. ‘I forget myself’: the case for the provision of culturally sensitive respite services for minority ethnic carers of older people. Journal of Public Health Medicine, 20, 2, 221–6.CrossRefGoogle ScholarPubMed
Nolan, M., Ingram, P. and Watson, R. 2002. Working with family carers of people with dementia: ‘negotiated’ coping as an essential outcome. Dementia, 1, 1, 75–93.CrossRefGoogle Scholar
O'Connor, D. 2007. Self-identifying as a caregiver: exploring the positioning process. Journal of Aging Studies, 21, 2, 165–74.CrossRefGoogle Scholar
Pilgrim, D. 1999. Who cares? Openmind, 98, 15.Google Scholar
Ribeiro, O., Paúl, C. and Nogueira, C. 2007. Real men, real husbands: caregiving and masculinities in later life. Journal of Aging Studies, 21, 4, 302–13.CrossRefGoogle Scholar
Robinson, C. A. 1994. Nursing interventions with families: a demand or an invitation to change? Journal of Advanced Nursing, 19, 5, 897–904.CrossRefGoogle ScholarPubMed
Robinson, C. and Williams, V. 2002. Carers of people with learning disabilities, and their experience of the 1995 Carers Act. British Journal of Social Work, 32, 2, 169–83.CrossRefGoogle Scholar
Schneider, J., Carpenter, J., Wooff, D., Brandon, T. and McNiven, F. 2001. Carers and community mental health services. Social Psychiatry and Psychiatric Epidemiology, 36, 12, 604–7.CrossRefGoogle ScholarPubMed
Shakespeare, T. 1993. Disabled people's self organisation: a new social movement? Disability, Handicap and Society, 8, 3, 249–64.CrossRefGoogle Scholar
Thomas, C., Morris, S. and Harman, J. 2002. Companions through cancer: the care given by informal carers in cancer contexts. Social Science and Medicine, 54, 4, 529–44.CrossRefGoogle ScholarPubMed
Warnes, A. M. 1993. Being old, old people and the burdens of burden. Ageing & Society, 13, 3, 297–338.CrossRefGoogle Scholar
Williams, V. and Robinson, C. 2001. ‘He will finish up caring for me’: people with learning disabilities and mutual care. British Journal of Learning Disabilities, 29, 2, 56–62.CrossRefGoogle Scholar