Hostname: page-component-586b7cd67f-dlnhk Total loading time: 0 Render date: 2024-11-20T13:37:20.649Z Has data issue: false hasContentIssue false
  • English
  • Français

Carers and Empowerment in the UK: A Critical Reflection

Published online by Cambridge University Press:  18 June 2013

Mary Larkin  and
Alisoun Milne
Mary Larkin
Affiliation:
School of Applied Social Sciences, De Montfort University E-mail: [email protected]
Alisoun Milne
Affiliation:
School of Social Policy, Sociology and Social Research, University of Kent E-mail: [email protected]
Get access Rights & Permissions [Opens in a new window]

Abstract

This article provides a critical reflection on carer empowerment in the UK, an issue which has received limited attention in policy and research. The arena is characterised by considerable conceptual confusion around key terminology, carer, care and caring, and by limited understanding of the meaning and outcomes of carer empowerment. Despite increased national acknowledgment of carers, a politically active carers' movement and a number of policies intended to enhance the recognition and rights of carers, many carers remain invisible and receive little support from services, to the detriment of their own health and well-being. Addressing these challenges, alongside developing a robust theoretical foundation for taking the ‘carers' agenda’ forward, is needed if carers are to move towards a more empowered status in the twenty-first century.

Keywords

Family carerscarecaringempowerment
Type
Articles
Information
Social Policy and Society , Volume 13 , Issue 1 , January 2014 , pp. 25 - 38
Copyright
Copyright © Cambridge University Press 2013 

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

Adams, R. (2003) Social Work and Empowerment, 3rd edition, London: Palgrave Macmillan.Google Scholar
Adams, R. (2008) Empowerment, Participation and Social Work, 4th edition, London: Palgrave Macmillan.Google Scholar
Ainsworth, M. D. S. and Bowlby, J. (1991) ‘An ethological approach to personality development’, American Psychologist, 46, 4, 331–41.Google Scholar
Anderson, R., Mikulic, B., Vermeylen, G., Lyly-Yrjanainen, M. and Zigante, V. (2009) Second European Quality of Life Survey Overview, Dublin: European Foundation for the Improvement of Living and Working Conditions.Google Scholar
Arksey, H. and Glendinning, C. (2007) ‘Choice in the context of informal care-giving’, Health and Social Care in the Community, 15, 2, 165–75.Google Scholar
Barnes, M. (2006) Caring and Social Justice, Basingstoke: Palgrave Macmillan.CrossRefGoogle Scholar
Becker, F. and Becker, S. (2008) Young Adult Carers in the UK: Experiences, Needs and Services for Carers Aged 16–24, London: The Princess Royal Trust for Carers.Google Scholar
Beresford, P. (2007) ‘User involvement, research and health inequalities: developing new directions’, Health and Social Care in the Community, 15, 4, 306–12.Google Scholar
Bowlby, S., McKie, L., Gregory, S. and Macpherson, I. (2010) Interdependency and Care Over the Life Course, Abingdon: Routledge.Google Scholar
Browning, D. (2007) Evaluation of the Self-Directed Support Network: A Review of Progress up to 31st March 2007, London: In Control.Google Scholar
Buckner, L. and Yeandle, S. (2011) Valuing Carers 2011: Calculating the Value of Carers’ Support, London: Carers UK.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, London: Macmillan, pp. 241–53.Google Scholar
Carers UK (2008) Carers in Crisis, London: Carers UK.Google Scholar
Carers UK (2010) Tipping Point for Care: Time for a New Social Contract, London: Carers UK.Google Scholar
Carers UK (2012a) Facts about Carers, London: Carers UK.Google Scholar
Carers UK (2012b) Future Care: Care and Technology in the 21st Century, London: Carers UK.Google Scholar
Carers UK (2012c) Draft Care and Support Bill, London: Carers UK.Google Scholar
Carr, S. (2010) Personalisation: A Rough Guide, London: Social Care Institute for Excellence.Google Scholar
Chamberlayne, P. and King, A. (2000) Cultures of Care: Biographies of Carers in Britain and the Two Germanies, Bristol: The Policy Press.Google Scholar
Chinn, D. (2011) ‘Critical health literacy: a review and critical analysis’, Social Science and Medicine, 73, 1, 60–7.Google Scholar
Clarke, J. (2005) ‘New Labour's citizens: activated, empowered, responsibilised, abandoned?’, Critical Social Policy, 25, 4, 447–63.Google Scholar
Clarke, N. (2001) ‘Training as a vehicle to empower carers in the community: more than a question of information sharing’, Health and Social Care in the Community, 9, 2, 79–88.Google Scholar
Clements, L. (2009) Carers and Their Rights: The Law Relating to Carers, 3rd edition, London: Carers UK.Google Scholar
Dalley, G. (1996) Ideologies of Caring: Rethinking Community and Collectivism, 2nd edition, London: Macmillan.Google Scholar
Department of Health (2007) Putting People First: A Shared Vision and Commitment to the Transformation of Adult Social Care, London: HMSO.Google Scholar
Department of Health (2010a) Recognised, Valued and Supported: Next Steps for the Carers Strategy, London: Department of Health.Google Scholar
Department of Health (2010b) A Vision for Adult Social Care: Capable Communities Active Citizens, London: Department of Health.Google Scholar
Department of Health, Social Services and Public Safety (2006) Caring for Carers, Belfast: Department of Health, Social Services and Public Safety.Google Scholar
Dominelli, L. and Gollins, T. (1997) ‘Men, power and caring relationships’, The Sociological Review, 45, 3, 396–415.CrossRefGoogle Scholar
Fine, M. and Glendinning, C. (2005) ‘Dependence, independence or inter-dependence? Revisiting the concepts of “care” and “dependence”’, Ageing and Society, 25, 4, 601–21.Google Scholar
Foucault, M. (1977) Discipline and Punishment, Harmondsworth: Penguin.Google Scholar
George, M. (2001) It Could Be You: A Report on the Chances of Becoming a Carer, London: Carers UK.Google Scholar
Gilbert, T. and Powell, J. L. (2010) ‘Power and social work in the United Kingdom: a Foucauldian excursion’, Journal of Social Work, 10, 1, 3–22.Google Scholar
Glasby, J. and Littlechild, R. (2010) Direct Payments and Personal Budgets: Putting Personalisation into Practice, Bristol: The Policy Press.Google Scholar
Glasby, J., Ham, C., Littlechild, R. and McKay, S. (2010) The Case for Social Care Reform: The Wider Economic and Social Benefits, Birmingham: Health Services Management Centre/Institute of Applied Social Studies.Google Scholar
Glendinning, C., Tjadens, F., Arksey, H., Moree, M., Moran, N. and Nies, H. (2009a) Care Provision within Families and Its Socio-Economic Impact on Care Providers, York: Social Policy Research Unit.Google Scholar
Glendinning, C., Arksey, H., Jon, K., Moran, N., Netten, A. and Rabiee, P. (2009b) The Individual Budgets Pilot Projects: Impact and Outcomes for Carers, York: Social Policy Research Unit.Google Scholar
Hatton, C., Duffy, S., Waters, J., Senker, J., Crosby, N., Poll, C., Tyson, A., Towell, D. and O'Brien, J. (2008) An Evaluation of and Report on in Control's Work 2005–2007, London: In Control.Google Scholar
Health and Social Care Information Centre (2010a) The Survey of Carers in Households, 2009/10 England, www.ic.nhs.uk/pubs/carersurvey0910.Google Scholar
Health and Social Care Information Centre (2010b) Personal Social Services Survey of Adult Carers in England, 2009–10, www.ic.nhs.uk/pubs/psscarersurvey0910.Google Scholar
HM Government (1995) Carers (Recognition and Services) Act, London: The Stationery Office.Google Scholar
HM Government (1999) Caring about Carers: A National Strategy for Carers, London: The Stationery Office.Google Scholar
HM Government (2005) Disability Discrimination Act, London: The Stationery OfficeGoogle Scholar
HM Government (2008) Carers at the Heart of 21st-Century Families and Communities: A Caring System on Your Side, London: The Stationery Office.Google Scholar
HM Government (2012) Draft Care and Support Bill, London: The Stationery Office.Google Scholar
HM Treasury and Department for Education and Skills (DfSE) (2007) Aiming High for Children: Supporting Families, London: HM Treasury.Google Scholar
Hockey, J. and James, A. (2002) Social Identities across the Life Course, Basingstoke: Palgrave Macmillan.Google Scholar
Hudson, B. (2005) ‘Sea change or quick fix? Policy on long-term conditions in England’, Health and Social Care in the Community, 13, 4, 378–85.Google Scholar
Hughes, G. (1998) ‘A suitable case for treatment? Constructions of disability’, in Saraga, E. (ed.), Embodying the Social: Constructions of Difference, London: Routledge.Google Scholar
Humphries, R. (2011) Social Care Funding and the NHS: An Impending Crisis?, London: Kings Fund.Google Scholar
King, D. and Pickard, L. (2013) ‘When is a carer's employment at risk? Longitudinal analysis of unpaid care and employment in midlife in England’, Health and Social Care in the Community, 21, 3, 303–14.Google Scholar
Kittay, E. F. (1999) Love's Labor: Essays on Women, Equality, and Dependency, London: Routledge.Google Scholar
Knapp, M. (2012) ‘Welcome from our Director’, in School for Social Care Research, Supporting the Future of Social Care through Research, London: NIHR School for Social Care Research.Google Scholar
Kumpers, S., Mur, I., Maarse, H. and van Raak, A. (2005) ‘A comparative study of dementia care in England and the Netherlands using neo-institutionalist perspectives’, Qualitative Health Research, 15, 9, 1199–230.Google Scholar
Larkin, M. (2012a) ‘ What about the carers?’, in Lloyd, C. E. and Heller, T. D. (eds.), Long Term Conditions: Challenges in Health and Social Care, London: Sage Publications.Google Scholar
Larkin, M. (2012b) ‘Working with vulnerable people: experiences of disability’, in Lloyd, C. E. and Heller, T. D. (eds.), Long Term Conditions: Challenges in Health and Social Care, London: Sage Publications.Google Scholar
Larkin, M. and Dickinson, H. (2011) ‘Personalisation: what will the impacts be for carers?’, Third Sector Research Centre Working Paper 64, www.tsrc.ac.uk/Publications/tabid/500/Default.aspx.Google Scholar
Larkin, M., Richardson, E.-L. and Tabreman, J. (2012) ‘New partnerships in health and social care for an era of public spending cuts’, Health and Social Care in the Community, 20, 2, 199–207.Google Scholar
Laverack, G. (2005) Public Health: Power, Empowerment and Professional Practice, Basingstoke: Palgrave Macmillan.Google Scholar
Lloyd, L. (2006) ‘Call us carers: limitations and risks in campaigning for recognition and exclusivity’, Critical Social Policy, 26, 4, 945–54.CrossRefGoogle Scholar
Lloyd, R. E. (2010) ‘The individual in social care: the ethics of care and the personalisation agenda in services for older people in England’, Ethics and Social Welfare, 4, 2, 188–200.CrossRefGoogle Scholar
Lyon, D. (2010) ‘Intersections and boundaries of work and non-work’, European Societies, 12, 2, 163–85.Google Scholar
Manthorpe, J., Rapaport, J. and Stanley, N. (2009) ‘Expertise and experience: people with experiences of using services and carers’ views of the Mental Capacity Act 2005’, British Journal of Social Work, 39, 5, 884–900.Google Scholar
Matka, E., River, D., Littlechild, R. and Powell, T. (2010) ‘Involving service users and carers in admissions for courses in social work and clinical psychology: cross-disciplinary comparison of practices at the University of Birmingham’, British Journal of Social Work, 40, 7, 2137–54.Google Scholar
McGarry, J. (2008) ‘Defining roles, relationships, boundaries and participation between elderly people and nurses within the home: an ethnographic study’, Health and Social Care in the Community, 17, 1, 83–91.Google Scholar
Means, R., Richards, S. and Smith, R. (2008) Community Care: Policy and Practice, 4th edition, Basingstoke: Palgrave Macmillan.CrossRefGoogle Scholar
Milne, A. (2010) ‘Dementia screening and early diagnosis: the case for and against’, Health, Risk and Society, 12, 1, 65–76.Google Scholar
Milne, A. and Hatzidimitriadou, E. (2003) ‘Isn't he wonderful? Exploring the contribution and conceptualisation of older husbands as carers’, Ageing International, 28, 4, 389–408.Google Scholar
Milne, A. and Williams, J. (2003). Women at the Crossroads: A Literature Review of the Mental Health Risks Facing Women in Mid-Life, London: Mental Health Foundation.Google Scholar
Milne, A., Palmer, A., Brigden, C. and Konta, E. (2012) ‘The intersection of work and care: evidence from a local case study’, European Journal of Social Work, DOI: 10.1080/13691457.2012.724388.Google Scholar
Molyneaux, V., Butchard, S., Simpson, J. and Murray, C. (2010) ‘Reconsidering the term “carer”: a critique of the universal adoption of the term “carer”’, Ageing and Society, 31, 3, 422–37.Google Scholar
Moran, N., Arksey, H., Glendinning, C., Jones, K., Netten, A. and Rabiee, P. (2012) ‘Personalisation and carers: whose rights? Whose benefits?’, British Journal of Social Work, 42, 3, 461–79.Google Scholar
Morris, J. (2001) ‘Impairment and disability: constructing an ethics of care which promotes human rights’, Hypatia, 16, 4, 1–16.Google Scholar
Morris, J. (2005) Citizenship and Disabled People: A Scoping Paper Prepared for the Disability Rights Commission, London: DRC.Google Scholar
Niblett, P. (2011) Personal Social Services Adult Social Care Survey, England 2010–11, Leeds: Health and Social Care Information Centre.Google Scholar
Nolan, M. R., Davies, S., Brown, J., Keady, J. and Nolan, J. (2004) ‘Beyond “person-centred” care: a new vision for gerontological nursing’, International Journal of Older People Nursing in Association with Journal of Clinical Nursing, 13, 3a, 45–53.Google Scholar
O'Connor, D. (2007) ‘Self-identifying as a caregiver: exploring the positioning process’, Journal of Aging Studies, 21, 2, 165–74.Google Scholar
Oliver, M. (1996) Understanding Disability: From Theory to Practice, Basingstoke: Palgrave Macmillan.Google Scholar
Oliver, M. (2004) ‘If I had a hammer: the social model in action’, in J. Swain, French, S., Barnes, C. and Thomas, C. (eds.), Disabling Barriers, Enabling Environments, London: Sage.Google Scholar
Parker, G. (1985) With Due Care and Attention: A Review of Research on Informal Care, London: Family Policy Studies Centre.Google Scholar
Parker, G. (1995) Where Next for Research on Carers?, Leicester: Nuffield Community Care Studies Unit, University of Leicester.Google Scholar
Pease, B. (2002) ‘Rethinking empowerment: a postmodern reappraisal for emancipatory practice’, British Journal of Social Work, 32, 2, 135–47.Google Scholar
Pickard, L. (2008) Informal Care for Older People Provided by Their Adult Children: Projections of Supply and Demand to 2041 in England, Report to the Strategy Unit and Department of Health, Canterbury: Personal Social Services Research Unit.Google Scholar
Priestly, M. (2010) Disability: A Lifecourse Approach, Cambridge: Polity Press.Google Scholar
Rapaport, J. and Manthorpe, J. (2008) ‘Family matters: developments concerning the role of the nearest relative and social worker’, British Journal of Social Work, 38, 6, 1115–31.Google Scholar
Ray, M., Bernard, M. and Phillips, J. (2009) Critical Issues in Social Work with Older People, Basingstoke: Palgrave Macmillan.Google Scholar
Ridley, J., Hunter, S. and Rosengard, A. (2010) ‘Partners in care? Views and experiences of carers from a cohort study of the early implementation of the Mental Health (Care and Treatment) (Scotland) Act 2003’, Health and Social Care in the Community, 18, 5, 474–82.Google Scholar
Robinson, L., Iliffe, S., Brayne, C., Goodman, C., Rait, G., Manthorpe, J., Ashley, P. and Moniz-Cook, E. (2010) ‘Primary care and dementia: 2. Long-term care at home: psychosocial interventions, information provision, carer support and case management’, International Journal of Geriatric Psychiatry, 25, 7, 657–64.Google Scholar
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, 755–78.Google Scholar
Roulstone, A. and Hudson, V. (2007) ‘Carer participation in England, Wales and Northern Ireland: a challenge for inter-professional working’, Journal of Interprofessional Care, 21, 3, 303–17.Google Scholar
Royal College of General Practitioners (2011) Supporting Carers: An Action Guide for General Practitioners and Their Teams, London: Royal College of General Practitioners.Google Scholar
Scottish Government (2010) Caring Together: The Carers Strategy for Scotland 2010–2015, Edinburgh: Scottish Government.Google Scholar
Seabrooke, V. and Milne, A. (2004) Culture and Care in Dementia: A Study of the Asian Community in North West Kent, London: Mental Health Foundation.Google Scholar
Sevenhuijsen, S. (1998) Citizenship and the Ethics of Care: Feminist Considerations of Justice, Morality and Politics, London: Routledge.Google Scholar
Shakespeare, T. and Watson, N. (2001) ‘The social model of disability: an outmoded ideology’, in Barnartt, S. N. and Altman, B. M. (eds.), Research in Social Science and Disability, Volume 2 – Exploring Theories and Expanding Methodologies: Where We Are and Where We Need to Go, New York: Elsevier Science, pp. 9–28.Google Scholar
Smith, R. (2008) Social Work and Power, Basingstoke: Palgrave Macmillan.Google Scholar
Social Care Institute for Excellence (2011) At a Glance 50: Reimbursements and Payments for Service User Involvement, London: Social Care Institute for Excellence.Google Scholar
Social Care Institute for Excellence (2012) The Involvement of Service Users and Carers in Social Work Education: A Practice Bench Marking Study, London: Social Care Institute for Excellence.Google Scholar
Stalker, K. (ed.) (2003) Reconceptualising Work with Carers: New Directions for Policy and Practice, London: Jessica Kingsley.Google Scholar
Symonds, A. and Kelly, A. (eds.) (1998) The Social Construction of Community Care, Basingstoke: Macmillan.Google Scholar
Tronto, J. C. (1993) Moral Boundaries: A Political Argument for an Ethic of Care, London: Routledge.Google Scholar
Twigg, J. (2006) The Body in Health and Social Care, Basingstoke: Palgrave Macmillan.Google Scholar
Twigg, J., Atkin, K. and Perring, C. (1990) Carers and Services: A Review of Research, London: HMSO.Google Scholar
Ungerson, C. (1983) ‘Why do women care?’, in Finch, J. and Groves, D. A. (eds.), Labour of Love: Women, Work and Caring, London: Routledge & Kegan Paul.Google Scholar
Walmsley, J. (1993) ‘Contradictions in caring: reciprocity and interdependence’, Disability, Handicap and Society, 8, 2, 129–41.Google Scholar
Warren, J. (2007) ‘Young carers: conventional or exaggerated levels of involvement in domestic and caring tasks?’, Children and Society, 21, 2, 136–46.Google Scholar
Welsh Government (2000) Caring about Carers: A Strategy for Carers in Wales and Associated Implementation Plan, Cardiff: Welsh Government.Google Scholar
White, C. (2013) 2011 Census Analysis: Unpaid Care in England and Wales, 2011 and Comparison with 2001, London: Office for National Statistics.Google Scholar
Yeandle, S. and Buckner, L. (2007) Carers, Employment and Services: Time for a New Social Contract?, CES Report No. 6, London: Carers UK.Google Scholar
Young, T. J., Manthorp, C., Howells, D. and Tullo, E. (2011) ‘Developing a carer communication intervention to support personhood and quality of life in dementia’, Ageing and Society, 31, 6, 1003–25.Google Scholar