Hostname: page-component-78c5997874-8bhkd Total loading time: 0 Render date: 2024-11-17T16:55:13.731Z Has data issue: false hasContentIssue false
  • English
  • Français

Partner care at the end-of-life: identity, language and characteristics

Published online by Cambridge University Press:  15 November 2010

ANNE CORDEN  and
MICHAEL HIRST
ANNE CORDEN*
Affiliation:
Social Policy Research Unit, University of York, York, UK.
MICHAEL HIRST
Affiliation:
Social Policy Research Unit, University of York, York, UK.
*
Address for correspondence: Anne Corden, Social Policy Research Unit, University of York, York YO10 5DD, UK. E-mail: [email protected]
Get access Rights & Permissions [Opens in a new window]

Abstract

The delivery of services and benefits to people supporting older and disabled relatives and friends depends largely on their identification within constructs of ‘care-giving’ and ‘carer’. Those who are married or living with a partner may be particularly resistant to adopting the identity of ‘care-giver’ or ‘care receiver’. This paper investigates the circumstances of couples and their adoption of carer identities, drawing on a study of the financial implications of a partner's death. That study was based on over 750 couples where one partner died, drawn from the British Household Panel Survey, and separate qualitative interviews with people whose partner died in the previous two years. The findings show that carer self-identification was influenced by the partner's health-care needs and service contacts, including welfare benefits receipts. None of the socio-demographic factors considered was statistically linked to whether people described themselves as providing care for their partner, unless there was an underlying association with the partner's health-care needs. The findings underline the problems of using self-reported identities in surveys and estimates of take-up of services and benefits, and the difficulties of delivering entitlements to people who care for their partner at the end-of-life. A challenge for policy makers is how to move beyond formal categories of ‘carer’ and ‘care-giving’ to incorporate inter-dependence, emotional commitment and the language of relationships in planning support for frail older people.

Keywords

carerscare-givingidentitypanel dataqualitative study
Type
Articles
Information
Ageing & Society , Volume 31 , Issue 2 , February 2011 , pp. 217 - 242
Copyright
Copyright © Cambridge University Press 2010

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Ahmad, W. 1996. Family obligations and social change among Asian communities. In Ahmad, W. and Atkin, K. (eds), ‘Race’ and Community Care. Open University Press, Buckingham, UK, 51–72.Google Scholar
Arber, S. and Ginn, J. 1990. The meaning of informal care: gender and the contribution of elderly people. Ageing & Society, 10, 4, 429–54.CrossRefGoogle Scholar
Arksey, H. and Hirst, M. 2005. Unpaid carers' access to and use of primary care services. Primary Health Care Research and Development, 6, 2, 101–16.CrossRefGoogle Scholar
Association of Directors of Adult Social Services (ADASS) 2010. Carers as Partners in Hospital Discharge. Improving Carer Recognition, Support and Outcomes Within Timely and Supported Discharge Processes: A Review. ADASS, London.Google Scholar
Becker, S., Aldridge, J. and Dearden, C. 1998. Young Carers and Their Families. Blackwell, Oxford.Google Scholar
Beresford, B. 1994. Positively Parents: Caring for a Severely Disabled Child. Her Majesty's Stationery Office, London.Google Scholar
Bytheway, B. and Johnson, J. 1998. The social construction of ‘carers’. In Symonds, A. and Kelly, A. (eds), The Social Construction of Community Care. Macmillan, Basingstoke, UK, 241–53.CrossRefGoogle Scholar
Carnelley, K., Pietromonaco, P. and Jaffe, K. 1996. Attachment, caregiving and relationship functioning in couples: effects of self and partner. Personal Relationships, 3, 3, 257–78.CrossRefGoogle Scholar
Cartwright, A. 1991. Changes in life and care in the year before death, 1969–1987. Journal of Public Health Medicine, 13, 2, 81–7.Google ScholarPubMed
Cavaye, J. 2006. Hidden Carers. Dunedin Academic Press, Edinburgh.Google Scholar
Clements, L. 2009. Carers and Their Rights: The Law Relating to Carers. Carers UK, London.Google Scholar
Cook, T. 2007. The History of the Carers' Movement. Carers UK, London.Google Scholar
Corden, A., Hirst, M. and Nice, K. 2008. Financial Implications of Death of a Partner. Social Policy Research Unit, University of York, York, UK.Google Scholar
Davidson, K., Arber, S. and Ginn, J. 2000. Gendered meanings of care work within late life marital relationships. Canadian Journal on Aging, 19, 4, 536–53.CrossRefGoogle Scholar
Department of Health 1989. Caring for People: Community Care in the Next Decade and Beyond. Cm 849, HMSO, London.Google Scholar
Department of Health 1999. National Service Framework for Mental Health. Department of Health, London.Google Scholar
Department of Health 2008. End of Life Care Strategy. Promoting High Quality Care for All Adults at the End of Life. Department of Health, London.Google Scholar
Department of Health 2009. Living Well with Dementia: A National Dementia Strategy. Department of Health, London.Google Scholar
Donnellan, H. 2009. GP Carers' Project: Final Evaluation Report. RE:search South West, Faculty of Health and Social Work, University of Plymouth, Plymouth, UK.Google Scholar
Fine, M. 2007. A Caring Society? Care and the Dilemmas of Human Service in the Twenty-first Century. Palgrave Macmillan, Basingstoke, UK.Google Scholar
Finucane, M., Slovic, P., Hibbard, J., Peters, E., Mertz, C. and MacGregor, D. 2002. Aging and decision-making competence: an analysis of comprehension and consistency skills in older versus younger adults considering health-plan options. Journal of Behavioral Decision Making, 15, 2, 141–64.CrossRefGoogle Scholar
Goldberg, D. and Williams, P. 1991. A User's Guide to the General Health Questionnaire. NFER-Nelson, Windsor, UK.Google Scholar
Gooberman-Hill, R. and Ebrahim, S. 2006. Informal care at times of change in health and mobility: a qualitative study. Age and Ageing, 35, 3, 261–66.CrossRefGoogle ScholarPubMed
Government Equalities Office 2009. A Fairer Future: The Equality Bill and Other Action to Make Equality a Reality. Government Equalities Office, London.Google Scholar
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
Henderson, J. and Forbat, L. 2002. Relationship-based social policy: personal and policy constructions of ‘care’. Critical Social Policy, 22, 4, 669–87.CrossRefGoogle Scholar
Her Majesty's Government 2008. Carers at the Heart of 21st Century Families and Communities. Department of Health, London.Google Scholar
Howarth, G. 1998. ‘Just live for today’: living, caring, ageing and dying. Ageing & Society, 18, 6, 673–89.CrossRefGoogle Scholar
Howse, K., Ebrahim, S. and Gooberman-Hill, R. 2005. Help-avoidance: why older people do not always seek help. Reviews in Clinical Gerontology, 14, 1, 63–70.CrossRefGoogle Scholar
Jarrold, K. and Yeandle, S. 2009. ‘A Weight off my Mind’. Exploring the Impact and Potential Benefits of Telecare for Unpaid Carers in Scotland. Carers Scotland, Glasgow.Google Scholar
Katbamna, S., Parker, G., Ahmad, W. and Baker, R. 1998. Experiences and Needs of Carers in the South Asian Communities. Nuffield Community Care Studies Centre, University of Leicester, Leicester, UK.Google Scholar
Lewis, R. 1998. The impact of the marital relationship on the experience of caring for an elderly spouse with dementia. Ageing & Society, 18, 2, 209–31.CrossRefGoogle Scholar
Lloyd, L. 2004. Mortality and morality: ageing and the ethics of care. Ageing & Society, 24, 2, 235–56.CrossRefGoogle Scholar
Lloyd, L. 2006. Call us carers: limitations and risks in campaigning for recognition and exclusivity. Critical Social Policy, 26, 4, 945–60.CrossRefGoogle Scholar
Maher, J. and Green, H. 2002. Carers 2000. Stationery Office, London.Google Scholar
National Audit Office 2009. Supporting Carers to Care. Stationery Office, London.Google Scholar
Nolan, M., Grant, G. and Keady, J. 1996. Understanding Family Care: A Multidimensional Model of Caring and Coping. Open University Press, Buckingham, UK.Google Scholar
O'Connor, D. 2007. Self-identifying as a caregiver: exploring the positioning process. Journal of Aging Studies, 21, 2, 165–74.CrossRefGoogle Scholar
Office for National Statistics 2009 a. 2008-based National Population Projections. Office for National Statistics, London.Google Scholar
Office for National Statistics 2009b. 2006-based marital status and cohabitation projections for England and Wales. Population Trends, 136, 112–20.CrossRefGoogle Scholar
Parker, G. 1993. With this Body: Caring and Disability in Marriage. Open University Press, Buckingham, UK.Google Scholar
Parker, G. and Lawton, D. 1994. Different Types of Care, Different Types of Carer: Evidence from the General Household Survey. HMSO, London.Google Scholar
Payne, S. 2004. Carers and caregivers. In Oliviere, D. and Monroe, B. (eds), Death, Dying, and Social Differences. Oxford University Press, Oxford, 181–98.Google Scholar
Pickard, S., Jacobs, S. and Kirk, S. 2003. Challenging professional roles: lay carers' involvement in health care in the community. Social Policy and Administration, 37, 1, 82–96.CrossRefGoogle Scholar
Pickard, L., Wittenberg, R., Comas-Herrera, A., Davies, B. and Darton, R. 2000. Relying on informal care in the new century? Informal care for elderly people in England to 2031. Ageing & Society, 20, 6, 745–72.CrossRefGoogle Scholar
Rogers, A., Chapple, A. and Halliwell, S. 1998. The influence of paid and unpaid work on help-seeking for primary care. Social Sciences in Health, 4, 3, 187–99.Google Scholar
Roulstone, A., Hudson, V., Kearney, J., Martin, A. with Warren, J. 2006. Working Together: Carer Participation in England, Wales and Northern Ireland. Social Care Institute for Excellence, London.Google Scholar
Taylor, M. (ed.) with Brice, J., Buck, N. and Prentice-Lane, E. 2006. British Household Panel Survey User Manual. Volume A: Introduction, Technical Report and Appendices. Institute for Social and Economic Research, University of Essex, Colchester, UK.Google Scholar
Twigg, J. (ed.)1992. Carers: Research and Practice. HMSO, London.Google Scholar
Twigg, J. and Atkin, K. 1994. Carers Perceived: Policy and Practice in Informal Care. Open University Press, Buckingham, UK.Google Scholar
Wong, S. 2004. Property regimes for home-sharers: the Civil Partnership Bill and some Antipodean models. Journal of Social Welfare and Family Law, 26, 4, 361–75.CrossRefGoogle Scholar