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Carers, Choice and Personalisation: What Do We Know?

Published online by Cambridge University Press:  15 June 2015

Mary Larkin  and
Wendy Mitchell
Mary Larkin
Affiliation:
Faculty of Health and Social Care, Open University E-mail: [email protected]
Wendy Mitchell
Affiliation:
Social Policy Research Unit, University of York E-mail: [email protected]
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Abstract

Despite the long-term strategic shift to personalisation, with its emphasis on choice and control for those who use public services, there has been relatively little policy consideration of family carers’ choice within personalisation. The relationship between carers and personalisation also remains under-researched. This article is based on a review of existing knowledge around personalisation. It shows that carer choice is highly complex, not least because of the multifaceted and paradoxical nature of the concept of choice itself. The review demonstrates that choice for carers within personalisation is no less complex and is subject to new and overlapping variables which do not necessarily lead to improved choice for carers. In light of the limited empirical evidence about carers, choice and personalisation, the introduction of the Care Act 2014, and the importance of frontline practice in securing choice for carers, recommendations are made for future research and social work policy and practice.

Keywords

Choicecarerscarer choicepersonalisationadult social care
Type
Articles
Information
Social Policy and Society , Volume 15 , Issue 2 , April 2016 , pp. 189 - 205
Copyright
Copyright © Cambridge University Press 2015 

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References

Arksey, H. and Glendinning, C. (2007) ‘Choice in the context of informal caregiving’, Health and Social Care in the Community, 15, 2, 165–75.Google Scholar
Baxter, K. and Glendinning, C. (2013) ‘The role of emotions in the process of making choices about welfare services: the experiences of disabled people in England’, Social Policy and Society, 12, 3, 439–50.Google Scholar
Beresford, P. (2008) ‘Time to get real about personalisation’, Journal of Integrated care, 16, 2, 2–4.CrossRefGoogle Scholar
Beresford, B. and Sloper, P. (2008) Understanding the Dynamics of Decision-Making and Choice: A Scoping Study of Key Psychological Theories to Inform the Design and Analysis of the Panel Study, Department of Health Paper 2215, York: Social Policy Research Unit, University of York.Google Scholar
Bowlby, S., McKie, L., Gregory, S. and MacPherson, I. (2010) Interdependency and Care Over the Life Course, Abingdon: Routledge.Google Scholar
Breda, J., Schoenmaekers, D., Van Landeghem, C., Claessems, D. and Geerts, J. (2006) ‘When informal care becomes a paid job; the case of personal assistance budgets in Flanders’, in Glendinning, C. and Kemp, P. (eds.), Cash and Care: Policy Challenges in the Welfare State, Bristol: Policy Press, pp. 155–70.Google Scholar
Brookes, N., Callaghan, L., Netten, A. and Fox, D. (2015) ‘Personalisation and innovation in a cold financial climate’, British Journal of Social Work, 45, 1, 86–103.Google Scholar
Burchardt, T., Evans, M. and Holder, H. (2015) ‘Public policy and inequalities of choice and autonomy’, Social Policy and Administration, 49, 1, 44–67.Google Scholar
Burridge, L., Winch, S. and Clavarino, A. (2007) ‘Reluctance to care: a systematic review and development of a conceptual framework’, Cancer Nursing, 30, 2, 9–19.Google Scholar
Callaghan, L., Netten, A., Brookes, N. and Fox, D. (2011) Personalisation of Services Scoping Study, London: NIHR SSCR, http://www.pssru.ac.uk/archive/pdf/p090.pdf [accessed 01.05.2014].Google Scholar
Carers Trust (2012) Progressing Personalisation: A Review of Personal Budgets and Direct Payments for Carers, London: Carers Trust.Google Scholar
Carers, UK (2013) The State of Caring 2013, London: Carers UK.Google Scholar
Cash, B., Hodgkin, S. and Warburton, J. (2013) ‘Till death us do part? A critical analysis of obligation and choice for spousal caregivers’, Journal of Gerontological Social Work, 56, 8, 657–74.Google Scholar
Clarke, J., Smith, N. and Vidler, E. (2005) ‘Constructing consumer-citizens: inequalities and instabilities’, in Powell, M.., Clarke, K. and Bauld, L. (eds.), Social Policy Review, 17, Bristol: The Policy Press.Google Scholar
Clarke, J., Newman, J. and Westmarland, L. (2007) ‘The antagonisms of choice: New Labour and the reform of public services’, Social Policy and Society, 7, 2, 245–53.CrossRefGoogle Scholar
Daly, G. (2012) ‘Citizenship, choice and care: an examination of the promotion of choice in the provision of adult social care’, Research, Policy and Planning, 29, 3, 179–89.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 (2009) Personal Health Budgets: First Steps, London: Department of Health.Google Scholar
Department of Health (2010a) Carers and Personalisation: Improving Outcomes, London: Department of Health.Google Scholar
Department of Health (2010b) A Vision for Adult Social Care: Capable Communities and Active Citizens, London: Department of Health.Google Scholar
Dickinson, H. and Glasby, J. (2010) The Personalisation Agenda: Implications for the Third Sector, Birmingham: Third Sector Research Centre.Google Scholar
Duncan-Turnbull, H. (2010) ‘It's your life, take control: evaluating self-directed support in Hertfordshire’, Journal of Care Services Management, 4, 3, 250–8.Google Scholar
Dunér, A. (2008) ‘Motives, experiences and strategies of next of kin helping older relatives in the Swedish welfare context: a qualitative study’, International Journal of Social Welfare, 19, 1, 54–62.Google Scholar
Egdell, V. (2013) ‘Who cares? Managing obligation and responsibility across the changing landscapes of informal dementia care’, Ageing and Society, 33, 5, 888–907.CrossRefGoogle Scholar
Fine, M. (2013) ‘Individualising care: the transformation of personal support in old age’, Ageing and Society, 33, 3, 421–36.Google 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
Flynn, M. (2005) Developing the Role of Personal Assistants, Leeds: Skills for Care.Google Scholar
Forder, J., Jones, K., Glendinning, C., Caiels, J., Welch, E., Baxter, K., Davidson, J., Windle, K., Irvine, A., King, D. and Dolan, P. (2012) Evaluation of the Personal Health Budget Pilot Programme, Discussion Paper 2840_2, Canterbury: Personal Social Services Research Unit, University of Kent.Google Scholar
Fotaki, M., Ruane, S. and Leys, C. (2013) What Is Social Care, and How Can Health Services Better Integrate with It?, London: Centre for Health and Public Interest, http://www.chpi.org.uk [accessed 01.05.2014].Google Scholar
Gardam, J. (2014) ADASS Budget Survey Report 2014: Final, London: ADASS.Google Scholar
Glasby, J. (2014) ‘The controversies of choice and control: why some people might be hostile to English social care reforms’, British Journal of Social Work, 44, 2, 252–66.Google Scholar
Glasby, J. and Littlechild, R. (2009) Direct Payments and Personal Budgets: Putting Personalisation into Practice, Bristol: The Policy Press.Google Scholar
Glendinning, C. (2008) ‘Increasing choice and control for older and disabled people: a critical review of new developments in England’ Social Policy and Administration, 42, 5, 451–69.Google Scholar
Glendinning, C., Mitchell, W. and Brooks, J. (2015) ‘Benefit or extra burden? Carers’ roles in personalised social care in England’, Health and Social Care in the Community, 23, 1, 23–32.Google Scholar
Glendinning, C., Arksey, H., Jones, K., Moran, N., Netten, A. and Rabiee, P. (2009) The Individual Budgets Pilot Projects: Impact and Outcomes for Carers, York: Social Policy Research Unit.Google Scholar
Great Britain (2004) Carers (Equal Opportunities) Act 2004, London: The Stationery Office.Google Scholar
Great Britain (2014) Care Act 2014, London: The Stationery Office.Google Scholar
Greener, I. (2002) ‘Agency, theory and social policy’, Critical Social Policy, 22, 4, 688–705.Google Scholar
Grootegoed, E. (2013) ‘Between “choice” and “active citizenship”: competing agendas for home care in the Netherlands’, Ethics and Social Welfare, 7, 2, 198–213.Google Scholar
Grootegoed, E., Knijn, T. and da Roit, B. (2010) ‘Relatives as paid care-givers: how family carers experience payments for care’, Ageing and Society, 30, 3, 467–89.Google Scholar
Gysels, M. and Higginson, I. (2009) ‘Reconciling employment with caring for a husband with an advanced illness’, British Medical Council Health Services Research, 9, 216, 1–6.Google Scholar
Hatton, C. and Waters, J. (2011) National Personal Budgets Survey 2011, London: Think Local Act Personal, In Control, Lancaster University.Google Scholar
Hatton, C., Waters, J. and Routledge, M. (2013) National Personal Budgets Survey 2013, London: Think Local Act Personal, In Control, Lancaster University.Google Scholar
HM Government (2008) Carers at the Heart of 21st Century Families and Communities, London: HM Government.Google Scholar
Hockey, J. and James, A. (2002) Social Identities across the Life-Course, Basingstoke: Palgrave Macmillan.Google Scholar
Jones, K., Netten, A., Rabiee, P., Glendinning, C., Arksey, H. and Moran, N. (2012) ‘Can individual budgets have a positive impact on carers and the caring role?’, Ageing and Society, 31, 1, 157–75.Google Scholar
Keefe, J. and Rajnovich, B. (2007) ‘To pay or not to pay: examining underlying principles in the debate on financial support for family caregivers’, Canadian Journal on Aging, 26, 1, 77–89.Google Scholar
Kremer, M. (2006) ‘Consumers in charge of care: the Dutch personal budget and its impact on the market, professionals and the family’, European Societies, 8, 3, 385–402.Google Scholar
Kuşçu, M., Dural, U., Yaşa, Y., Kiziltoprak, S. and Önen, P. (2009) ‘Decision pathways and individual motives in informal caregiving during cancer treatment in Turkey’, European Journal of Cancer Care, 18, 6, 569–76.Google Scholar
Larkin, M. (2015) ‘Developing the knowledge base about carers and personalisation: the contributions made by an exploration of carers’ perspectives on personal budgets and the carer-service user relationship’, Health and Social Care in the Community, 23, 1, 33–41.Google Scholar
Larkin, M. and Milne, A. (2014) ‘Carers and empowerment in the UK: a critical reflection’, Social Policy and Society, 13, 1, 25–38.Google Scholar
Larkin, M. and Dickinson, H. (2011) Personalisation: What Will the Impacts Be for Carers?, Third Sector Research Centre Working Paper 64, Birmingham: Third Centre Research Centre.Google Scholar
Leece, J. and Leece, D. (2011) ‘Personalisation: perceptions of the role of social work in a world of brokers and budgets’, British Journal of Social Work, 41, 2, 204–23.Google Scholar
Lent, A. and Arend, N. (2004) Making Choices: How Can Choice Improve Local Public Services? London: New Local Government Network.Google Scholar
Le Grand, J. (ed.) (2007) The Other Invisible Hand: Delivering Public Services Through Choice and Competition, Princeton, NJ: Princeton University Press.Google Scholar
Longacre, M., Ross, E. and Fang, C. (2013) ‘Caregiving choice and emotional stress among cancer caregivers’, Western Journal of Nursing Research, 36, 6, 806–24.Google Scholar
Lymbery, M. (2012) ‘Social work and personalisation’, British Journal of Social Work, 42, 4, 783–92.Google Scholar
Lyon, D. (2010) ‘Intersections and boundaries of work and non-work’, European Societies, 12, 2, 163–85.Google Scholar
Manthorpe, J., Hindes, J., Martineau, S., Cornes, M., Ridley, J., Rosengard, A., Hunter, S., Little, S. and Gray, B. (2011) Self Directed Support: A Review of the Barriers and Facilitators, Edinburgh: Scottish Government Social Research.Google Scholar
McNeil, C. and Hunter, J. (2014) The Generation Strain: Collective Solutions to Care in an Ageing Society, London: Institute for Public Policy Research.Google Scholar
Milligan, C. and Wiles, J. (2010) ‘Landscapes of care’, Progress in Human Geography, 34, 6, 715–35.Google Scholar
Mitchell, W. (2012) ‘Making choices about medical interventions: the experiences of disabled young people with degenerative conditions’, Health Expectations, 17, 2, 254–66.Google Scholar
Mitchell, W. and Glendinning, C. (2015) How Do Local Authorities Allocate Resources to Carers through Carer Personal Budgets?, SSCR Research Findings, London: NIHR School for Social Care Research.Google Scholar
Mitchell, W., Brooks, J. and Glendinning, C. (2013) Carers and Personalisation: What Role Do Carers Play in Personalised Adult Social Care? What Roles Do Carers and Service Users Want Carers to Play? SSCR Research Findings, London: NIHR School for Social Care Research.Google Scholar
Mitchell, W., Brooks, J. and Glendinning, C. (2014a) ‘Carers’ roles in personal budgets: tensions and dilemmas in front line practice’, British Journal of Social Work, published on-line in advance of print, doi:10.1093/bjsw/bcu018.Google Scholar
Mitchell, W., Brooks, J. and Glendinning, C (2014b) ‘Personalisation: where do carers fit?’, in Needham, C. and Glasby, J. (eds.), Personalisation: Debates and Controversies, Basingstoke: Palgrave, pp. 65–74.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.CrossRefGoogle Scholar
Morris, J. (2006) ‘Independent living: the role of the disability movement in the development of government policy,’ in Glendinning, C. and Kemp, P. (eds.), Cash and Care: Policy Changes in the Welfare State, Bristol: The Policy Press, pp. 235–48.Google Scholar
Morris, S. (2001) ‘Joint and individual interviewing in the context of cancer’, Qualitative Health Research, 11, 4, 553–67.Google Scholar
Needham, C. (2011) ‘Personalisation: from story-line to practice’, Social Policy and Administration, 45, 1, 54–68.Google Scholar
Needham, C. (2013) The Boundaries of Budgets: Why Should Individuals Make Spending Choices about Their Health and Social Care?, London: Centre for Health and the Public Interest, http://chpi.org.uk/wp-content/uploads/2013/07/Boundaries-of-Budgets-Catherine-Needham-July-31.pdf [accessed 13.05.2015].Google Scholar
Needham, C. (2014) ‘The spaces of personalisation: place and distance in caring labour’, Social Policy and Society, 14, 3, 357–69.Google Scholar
Office for Public Management (2011) ‘In Our Own Words’: The Impact of Cash Payments on Service Users and Their Families, Longitudinal study in Essex, Briefing paper 5, London: Office for Public Management.Google Scholar
Oudijk, D., Woittiez, I. and deBoer, A. (2011) ‘More family responsibility, more informal care? The effect of motivation on the giving of informal care by people aged over 50 in the Netherlands compared to other European countries’, Health Policy, 101, 3, 228–35.Google Scholar
Pickard, L. and King, D. (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
Pickard, L., King, D. and Knapp, M. (2015) ‘The “visibility” of unpaid care in England’, Journal of Social Work, pubished on-line before print, doi: 10.1177/1468017315569645.Google Scholar
Pickard, S. (2010) ‘The “good carer”: moral practices in late modernity’, Sociology, 44, 3, 471–87.Google Scholar
Poll, C. (2007) ‘Co-production in supported housing: KeyRing living support networks and neighbourhood networks’, in Hunter, S. and Ritchie, P. (eds.), Research Highlights in Social Work 49: Co-Production and Personalisation in Social Care Changing Relationships in the Provision of Social Care, London: Jessica Kingsley, pp. 49–66.Google Scholar
Pratesi, A. (2011) ‘The productivity of care: contextualizing care in situated interaction and shedding light on its latent purposes’, Ethics and Social Welfare, 5, 2, 123–37.Google Scholar
Rabiee, P. (2013) ‘Exploring the relationships between choice and independence: experiences of disabled and older people’, British Journal of Social Work, 43, 5, 872–88.Google Scholar
Rabiee, P. and Glendinning, C. (2010) ‘Choice: what, when and why? Exploring the importance of choice to disabled people’, Disability and Society, 25, 7, 827–39.Google Scholar
Rand, S. and Malley, J. (2014) ‘Carers quality of life and experiences of adult social care support in England’, Health and Social Care in the Community, 22, 4, 375–85.Google Scholar
Ritters, K., Steils, N., Woolham, J. and Daly, G. (2014) ‘Personal budgets in the real world: views of social services personalisation leads, users, unpaid carers and social workers’, Social Policy Confronting Change: Resistance, Resilience and Radicalism, Social Policy Association Annual Conference, University of Sheffield, 14–16 July.Google Scholar
Rodrigues, R. and Glendinning, C. (2014) ‘Choice, competition and care – developments in English social care and the impacts on providers and older users of home care services’, Social Policy and Administration, published on-line in advance of print, doi:10.1111/spol.12099.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
Routledge, M. and Lewis, J. (2011) Personal Budgets: Taking Stock, Moving Forward, London: Think Local Act Personal.Google Scholar
Rummery, K. (2011) ‘A comparative analysis of personalisation: balancing an ethic of care with user empowerment’, Ethics and Social Welfare, 5, 2, 138–52.Google Scholar
Sandel, M. (2012) What Money Can't Buy: The Moral Limits of Markets, London: Allen Lane.Google Scholar
Schulz, R., Beach, S., Cook, T., Martire, L., Tomlinson, J. and Monin, J. (2012) ‘Predictors and consequences of perceived lack of choice in becoming an informal caregiver’, Aging and Mental Health, 16, 6, 712–21.Google Scholar
Schwartz, B. (2004) The Paradox of Choice: Why Less is More, London: Harper Collins.Google Scholar
Seddon, D. and Robinson, C. (2015) ‘Carer assessment: continuing tensions and dilemmas for social care practice’, Health and Social Care in the Community, 23, 1, 14–22.Google Scholar
Seddon, D., Robinson, C., Reeves, C., Tommis, Y., Woods, B. and Russell, I. (2007) ‘In their own right: translating the policy of carer assessment into practice’, British Journal of Social Work, 37, 8, 1335–52.Google Scholar
Shakespeare, T. (2000) ‘The social relations of care’, in Lewis, G., Gewirtz, S. and Clarke, J. (eds.), Rethinking Social Policy, California: Sage, pp. 52–65.Google Scholar
Spicker, P. (2012) ‘Personalisation falls short’, British Journal of Social Work, 42, 1, 1–17.Google Scholar
Twigg, J. (1982) ‘Models of carers: how do social care agencies conceptualise their relationship with informal carers?’, Journal of Social Policy, 18, 1, 53–66.Google Scholar
Twigg, J. and Atkin, K. (1994) Carers Perceived: Policy and Practice in Informal Care, Buckingham: Open University Press.Google Scholar
Twigg, J. and Atkin, K. (1995) ‘Carers and services: factors mediating service provision’, Journal of Social Policy, 24, 1, 5–30.Google Scholar
Winter, K., Bouldin, E. and Andressen, E. (2010) ‘Lack of choice in caregiving decision and caregiver risk of stress’, Preventing Chronic Disease: Public Health Research, Practice and Policy, 7, 2, Article No. 41, http://www.cdc.gov/pcd/issues/2010/mar/09_0037.htm [accessed 13.05.2015].Google Scholar
Woolham, J. and Benton, C. (2012) ‘The costs and benefits of personal budgets for older people: evidence from a single local authority’, British Journal of Social Work, 43, 8, 1472–91.Google Scholar
Zegwaard, M., Aartsen, M., Grypdonck, M. and Cuijpers, P. (2013) ‘Differences in impact of long term caregiving for mentally older adults on the daily life of informal caregivers: a qualitative study’, BMC Psychiatry, 13, 103, 1–9.Google Scholar