The consequences for unpaid carers of unmet need for long-term care services in England

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  • 1 London School of Economics and Political Science, UK
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Under-provision of long-term care services for people with support needs may have consequences for both them and their unpaid carers. Using in-depth interviews with 23 co-resident carers living in England, our study aimed to explore the impacts of unmet need on unpaid carers and how such impacts occur. Unmet need for services – services not being received or gaps between provision and need – had multidimensional impacts on carers. Key mechanisms were constrained opportunities through limited time or emotional resources, and constrained choices about whether and how to provide care, as well as over multiple other aspects of their lives.

  • Abel, T. and Frohlich, K.L. (2012) Capitals and capabilities: linking structure and agency to reduce health inequalities, Social Science and Medicine, 74(2): 23644, doi: 10.1016/j.socscimed.2011.10.028.

    • Search Google Scholar
    • Export Citation
  • Age UK (2019) Briefing: Health and Care of Older People in England 2019, London: Age UK.

  • Aldridge, J. and Becker, S. (1999) Children as carers: the impact of parental illness and disability on children’s caring roles, Journal of Family Therapy, 21(3): 30320, doi: 10.1111/1467–6427.00121.

    • Search Google Scholar
    • Export Citation
  • Al-Janabi, H., Carmichael, F. and Oyebode, J. (2018) Informal care: choice or constraint?, Scandinavian Journal of Caring Sciences, 32(1): 15767, doi: 10.1111/scs.12441.

    • Search Google Scholar
    • Export Citation
  • Arksey, H. and Glendinning, C. (2008) Combining work and care: carers’ decision-making in the context of competing policy pressures, Social Policy and Administration, 42(1): 118, doi: 10.1111/j.1467-9515.2007.00587.x.

    • Search Google Scholar
    • Export Citation
  • Au, A., Lau, K.M., Sit, E., Cheung, G., Lai, M.K., Wong, S.K.A. and Fok, D. (2010) The role of self-efficacy in the Alzheimer’s family caregiver stress process: a partial mediator between physical health and depressive symptoms, Clinical Gerontologist, 33(4): 298315, doi: 10.1080/07317115.2010.502817.

    • Search Google Scholar
    • Export Citation
  • Bennett, M.R., Zhang, Y. and Yeandle, S. (2020) Caring and COVID-19: Financial Wellbeing, Sheffield: CIRCLE, University of Sheffield, http://circle.group.shef.ac.uk/.

    • Search Google Scholar
    • Export Citation
  • Braun, V. and Clarke, V. (2006) Using thematic analysis in psychology, Qualitative Research in Psychology, 3(2): 77101, doi: 10.1191/1478088706qp063oa.

    • Search Google Scholar
    • Export Citation
  • Braun, V. and Clarke, V. (2019) Reflecting on reflexive thematic analysis, Qualitative Research in Sport, Exercise and Health, 11(4): 58997, doi: 10.1080/2159676X.2019.1628806.

    • Search Google Scholar
    • Export Citation
  • Brimblecombe, N., Pickard, L., King, D. and Knapp, M. (2016) Perceptions of unmet needs for community social care services in England. A comparison of working carers and the people they care for, Health & Social Care in the Community, 45: 43546, doi: 10.1111/hsc.12323.

    • Search Google Scholar
    • Export Citation
  • Brimblecombe, N., Fernández, J., Knapp, M., Rehill, A. and Wittenberg, R. (2018a) Review of the international evidence on support for unpaid carers, Journal of Long-Term Care, September: 2540, doi: 10.31389/jltc.3.

    • Search Google Scholar
    • Export Citation
  • Brimblecombe, N., Pickard, L., King, D. and Knapp, M. (2018b) Barriers to receipt of social care services for working carers and the people they care for in times of austerity, Journal of Social Policy, 47(2): 21533, doi: 10.1017/S0047279417000277.

    • Search Google Scholar
    • Export Citation
  • Brouwer, W.B.F., van Exel, N.J.A., van den Berg, B., van den Bos, G.A.M. and Koopmanschap, M.A. (2005) Process utility from providing informal care: the benefit of caring, Health Policy, 74(1): 8599, doi: 10.1016/j.healthpol.2004.12.008.

    • Search Google Scholar
    • Export Citation
  • Carers UK (2020) Caring behind Closed Doors, London: Carers UK.

  • Dahlgren, G. and Whitehead, M. (1991) Policies and Strategies to Promote Social Equity in Health, Stockholm, Sweden: Institute for Future Studies.

    • Search Google Scholar
    • Export Citation
  • Del Pino-Casado, R., Espinosa-Medina, A., López-Martínez, C. and Orgeta, V. (2019) Sense of coherence, burden and mental health in caregiving: a systematic review and meta-analysis, Journal of Affective Disorders, 242: 1421, doi: 10.1016/j.jad.2018.08.002.

    • Search Google Scholar
    • Export Citation
  • Department of Health and Social Care (2020) Care Act easements: guidance for local authorities, www.gov.uk/government/publications/coronavirus-covid-19-changes-to-the-care-act-2014/care-act-easements-guidance-for-local-authorities.

    • Search Google Scholar
    • Export Citation
  • Dowling, M. and Dolan, L. (2001) Families with children with disabilities – inequalities and the social model, Disability & Society, 16(1): 2135, doi: 10.1080/713662027.

    • Search Google Scholar
    • Export Citation
  • García-Gómez, P., Hernández-Quevedo, C., Jiménez-Rubio, D. and Oliva-Moreno, J. (2015) Inequity in long-term care use and unmet need: two sides of the same coin, Journal of Health Economics, 39: 14758, doi: 10.1016/j.jhealeco.2014.11.004.

    • Search Google Scholar
    • Export Citation
  • Geyer, J. and Korfhage, T. (2015) Long-term care insurance and carers’ labor supply – a structural model, Health Economics, 24(9): 117891, doi: 10.1002/hec.3200.

    • Search Google Scholar
    • Export Citation
  • Gibson, G., Grignon, M., Hurley, J. and Wang, L. (2019) Here comes the SUN: self-assessed unmet need, worsening health outcomes, and health care inequity, Health Economics, 28(6): 72735, doi: 10.1002/hec.3877.

    • Search Google Scholar
    • Export Citation
  • Giebel, C. et al. (2020) Decision-making for receiving paid home care for dementia in the time of COVID-19: a qualitative study, BMC Geriatrics, 20(1): 333, doi: 10.1186/s12877-020-01719-0.

    • Search Google Scholar
    • Export Citation
  • Guio, A.C., Marlier, E., Gordon, D., Fahmy, E., Nandy, S. and Pomati, M. (2016) Improving the measurement of material deprivation at the European Union level, Journal of European Social Policy, 26(3): 219333, doi: 10.1177/0958928716642947.

    • Search Google Scholar
    • Export Citation
  • Hackett, R.A., Steptoe, A., Lang, R.P. and Jackson, S.E. (2020) Disability discrimination and well-being in the United Kingdom: a prospective cohort study, BMJ Open, 10(3): e035714, doi: 10.1136/bmjopen-2019–035714.

    • Search Google Scholar
    • Export Citation
  • Heger, D. (2014) Work and Well-Being of Informal Caregivers in Europe (RUHR Economic Papers), Bochum, Germany: Ruhr-Universität Bochum.

    • Search Google Scholar
    • Export Citation
  • Henwood, M., Larkin, M. and Milne, A. (2017) Seeing the Wood for the Trees, Milton Keynes: Open University.

  • Her Majesty’s Government (2014) Care Act 2014, London: The Stationery Office, www.legislation.gov.uk/ukpga/2014/23/contents/enacted/data.htm.

    • Search Google Scholar
    • Export Citation
  • Her Majesty’s Government (2020) Coronavirus Act 2020, www.legislation.gov.uk/ukpga/2020/7/contents.

  • Hernández-Quevedo, C., Masseria, C. and Mossialos, E. (2010) Methodological Issues in the Analysis of the Socioeconomic Determinants of Health Using EU-SILC Data, Luxembourg: Publications Office of the European Union.

    • Search Google Scholar
    • Export Citation
  • Hirst, M. (2004) Health Inequalities and Informal Care: End of Project Report, York: Social Policy Research Unit, www.york.ac.uk/inst/spru/pubs/pdf/healthinequalities.pdf.

    • Search Google Scholar
    • Export Citation
  • Hrast, M.F., Mrak, A.K. and Rakar, T. (2013) Social exclusion of elderly in Central and Eastern Europe, International Journal of Social Economics, 40(11): 97189, doi: 10.1108/IJSE-05-2012-0082.

    • Search Google Scholar
    • Export Citation
  • Ilinca, S., Rodrigues, R. and Schmidt, A.E. (2017) Fairness and eligibility to long-term care: an analysis of the factors driving inequality and inequity in the use of home care for older Europeans, International Journal of Environmental Research and Public Health, 14(10): 1224, doi: 10.3390/ijerph14101224.

    • Search Google Scholar
    • Export Citation
  • Institute of Fiscal Studies (2017) Public spending on adult social care in England, www.ifs.org.uk/uploads/publications/bns/BN200.pdf.

  • Lawrence, R.H., Tennstedt, S.L. and Assmann, S.F. (1998) Quality of the caregiver–care recipient relationship: does it offset negative consequences of caregiving for family caregivers?, Psychology and Aging, 13(1): 1508, doi: 10.1037/0882-7974.13.1.150.

    • Search Google Scholar
    • Export Citation
  • Mack, J. and Lansley, S. (1985) Poor Britain, London: George Allen & Unwin.

  • McKnight, A., Loureiro, P.M. and Vizard, P. (2019) Multidimensional Inequality Framework (MIF). CASE, LSE, http://sticerd.lse.ac.uk/inequality/default.asp#.

    • Search Google Scholar
    • Export Citation
  • Nussbaum, M.C. (2001) Symposium on Amartya Sen’s philosophy: 5 adaptive preferences and women’s options, Economics and Philosophy, 17(1): 6788, doi: 10.1017/S0266267101000153.

    • Search Google Scholar
    • Export Citation
  • OECD (Organisation for Economic Co-operation and Development) (2019) Health at a Glance 2019: OECD Indicators, Paris: OECD Publishing.

  • Oliver, M. and Barnes, C. (2012) The New Politics of Disablement, Basingstoke and New York: Palgrave Macmillan.

  • Patton, M.Q. (2014) Qualitative Research & Evaluation Methods: Integrating Theory and Practice, Thousand Oaks, CA: SAGE Publications Inc.

    • Search Google Scholar
    • Export Citation
  • Petrie, K. and Kirkup, J. (2018) Caring for Carers: The Lives of Family Carers in the UK, London: Social Market Foundation.

  • Pickard, L. (2004) The Effectiveness and Cost-effectiveness of Support and Services to Informal Carers of Older People, London: Audit Commission.

    • Search Google Scholar
    • Export Citation
  • Pickard, L., King, D., Brimblecombe, N. and Knapp, M. (2015) The effectiveness of paid services in supporting unpaid carers’ employment in England, Journal of Social Policy, 44(3): 56790, doi: 10.1017/S0047279415000069.

    • Search Google Scholar
    • Export Citation
  • QSR International Pty Ltd (2018) NVivo (Version 12).

  • Rand, S., Malley, J. and Netten, A. (2012) Measuring the Social Care Outcomes of Informal Carers, (PSSRU Discussion Paper 2833), Kent: PSSRU, University of Kent.

    • Search Google Scholar
    • Export Citation
  • Rand, S. and Malley, J. (2014) Carers’ quality of life and experiences of adult social care support in England, Health & Social Care in the Community, 22(4): 37585, doi: 10.1111/hsc.12089.

    • Search Google Scholar
    • Export Citation
  • Rand, S., Vadean, F. and Forder, J.E. (2019) The impact of social care services on carers’ quality of life, International Journal of Care and Caring, 4(2): 23559, doi: 10.1332/239788219X15718896111445.

    • Search Google Scholar
    • Export Citation
  • Rand, S., Vadean, F. and Forder, J. (2020) What does an outcomes-based perspective bring to an understanding of care and caring?, International Journal of Care and Caring, 4(4): 60510, doi: 10.1332/239788220x16002700913659.

    • Search Google Scholar
    • Export Citation
  • Robeyns, I. (2016) Capabilitarianism, Journal of Human Development and Capabilities, 17(3): 397414, doi: 10.1080/19452829.2016.1145631.

    • Search Google Scholar
    • Export Citation
  • Robison, J., Fortinsky, R., Kleppinger, A., Shugrue, N. and Porter, M. (2009) A broader view of family caregiving: effects of caregiving and caregiver conditions on depressive symptoms, health, work, and social isolation, Journals of Gerontology – Series B Psychological Sciences and Social Sciences, 64(6): 78898, doi: 10.1093/geronb/gbp015.

    • Search Google Scholar
    • Export Citation
  • Rodrigues, R., Schulmann, K., Schmidt, A., Kalavrezou, N. and Matsaganis, M. (2013) The Indirect Costs of Long-Term Care (Research Note 8/2013), Luxembourg: European Commission Directorate-General for Employment, Social Affairs and Inclusion.

    • Search Google Scholar
    • Export Citation
  • Rodrigues, R., Ilinca, S. and Schmidt, A.E. (2018) Income-rich and wealth-poor? The impact of measures of socio-economic status in the analysis of the distribution of long-term care use among older people, Health Economics, 27(3): 63746, doi: 10.1002/hec.3607.

    • Search Google Scholar
    • Export Citation
  • Schulz, R., Beach, S.R., Cook, T.B., Martire, L.M., Tomlinson, J.M. and Monin, J.K. (2012) Predictors and consequences of perceived lack of choice in becoming an informal caregiver, Aging & Mental Health, 16(6): 71221, doi: 10.1080/13607863.2011.651439.

    • Search Google Scholar
    • Export Citation
  • Sen, A. (1985a) Commodities and Capabilities, Amsterdam: North-Holland.

  • Sen, A. (1985b) Women, Technology and Sexual Divisions, Geneva: United Nations.

  • Sen, A. (1985c) Well-being, agency and freedom: the Dewey lectures 1984, The Journal of Philosophy, 82(4): 169221.

  • Sen, A. (1992) Inequality Reexamined, Oxford: Clarendon Press.

  • Sen, A. (2009) The Idea of Justice, London: Allen Lane.

  • Solar, O. and Irwin, A. (2010) A Conceptual Framework for Action on the Social Determinants of Health (Social Determinants of Health Discussion Paper 2 [Policy and Practice]), Geneva: World Health Organisation, http://apps.who.int/iris/bitstream/10665/44489/1/9789241500852_eng.pdf?ua=1&ua=1.

    • Search Google Scholar
    • Export Citation
  • Tough, H., Brinkhof, M.W.G., Siegrist, J., Fekete, C. and SwiSCI Study Group (2019) Social inequalities in the burden of care: a dyadic analysis in the caregiving partners of persons with a physical disability, International Journal for Equity in Health, 19(1): 3, doi: 10.1186/s12939-019-1112-1.

    • Search Google Scholar
    • Export Citation
  • Vlachantoni, A. (2019) Unmet need for social care among older people, Ageing and Society, 39(4): 65784, doi: 10.1017/S0144686X17001118.

    • Search Google Scholar
    • Export Citation
  • Vlachantoni, A., Evandrou, M., Falkingham, J. and Robards, J. (2013) Informal care, health and mortality, Maturitas, 74(2): 11418, doi: 10.1016/j.maturitas.2012.10.013.

    • Search Google Scholar
    • Export Citation
  • Vlachantoni, A., Shaw, R., Evandrou, M. and Falkingham, J. (2015) The determinants of receiving social care in later life in England, Ageing and Society, 35(2): 32145, doi: 10.1017/S0144686X1300072X.

    • Search Google Scholar
    • Export Citation
  • Watkins, J., Wulaningsih, W., Da Zhou, C., Marshall, D.C., Sylianteng, G.D.C., Dela Rosa, P.G., Miguel, V.A., Raine, R., King, L.P. and Maruthappu, M. (2017) Effects of health and social care spending constraints on mortality in England: a time trend analysis, BMJ Open, 7(11): e017722, doi: 10.1136/bmjopen-2017–017722.

    • Search Google Scholar
    • Export Citation
  • Yeandle, S., Bennett, C. and Buckner, L. (2007) Carers, Employment and Services in Their Local Context, Leeds: University of Leeds.

  • 1 London School of Economics and Political Science, UK

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