The impact of social care services on carers’ quality of life

Authors:
Stacey RandUniversity of Kent, UK

Search for other papers by Stacey Rand in
Current site
Google Scholar
Close
,
Florin VadeanUniversity of Kent, UK

Search for other papers by Florin Vadean in
Current site
Google Scholar
Close
, and
Julien ForderUniversity of Kent, UK

Search for other papers by Julien Forder in
Current site
Google Scholar
Close
Restricted access
Get eTOC alerts
Rights and permissions Cite this article

Unpaid care is an important part of long-term care systems. It is increasingly recognised that carers have their own health and well-being needs. Carer-specific interventions, as well as support for the care-recipient, may enable carers to maintain their own health and well-being alongside caring. This study seeks to establish whether and how community-based care services affect carers’ quality of life. The Adult Social Care Outcomes Toolkit for Carers was used to capture carers’ social care-related quality of life through qualitative interviews and a survey of carers in England in order to provide insights into the impact of community-based care services on carers’ quality of life outcomes.

  • Al-Janabi, H., Van Exel, J., Brouwer, W. and Coast, J. (2016) A framework for including family health spillovers in economic evaluation, Medical Decision Making, 36(2): 17686. doi: 10.1177/0272989X15605094

    • Search Google Scholar
    • Export Citation
  • Basu, A. and Meltzer, D. (2005) Implications of spillover effects within the family for medical cost-effectiveness analysis, Journal of Health Economics, 24(4): 75173. doi: 10.1016/j.jhealeco.2004.12.002

    • Search Google Scholar
    • Export Citation
  • Batchelder, L., Malley, J., Burge, P., Lu, H., Saloniki, E.C., Linnosmaa, I., Trukeschitz, B. and Forder, J. (2018) Carer Social Care-Related Quality of Life Outcomes: Estimating English Preference Weights for the Adult Social Care Outcomes Toolkit for Carers (ASCOT-Carer), Canterbury: Personal Social Services Research Unit, University of Kent https://www.valueinhealthjournal.com/article/S1098-3015(19)32337-X/pdf.

    • Search Google Scholar
    • Export Citation
  • Becker, G. (1981) A Treatise on the Family, Cambridge, MA: Harvard University Press.

  • Bobinac, A., Van Exel, N.J.A., Rutten, F.F.H. and Brouwer, W.B.F. (2010) Caring for and caring about: disentangling the caregiver effect and the family effect, Journal of Health Economics, 29(4): 54956. doi: 10.1016/j.jhealeco.2010.05.003

    • Search Google Scholar
    • Export Citation
  • Bobinac, A., Van Exel, N.J.A., Rutten, F.F.H. and Brouwer, W.B.F. (2011) Health effects in significant others, Medical Decision Making, 31(2): 2928. doi: 10.1177/0272989X10374212

    • Search Google Scholar
    • Export Citation
  • Bonsang, E. (2009) Does informal care from children to their elderly parents substitute for formal care in Europe?, Journal of Health Economics, 28(1): 14354. doi: 10.1016/j.jhealeco.2008.09.002

    • Search Google Scholar
    • Export Citation
  • Brimblecombe, N., Fernandez, J.-L., Knapp, M., Rehill, A. and Wittenberg, R. (2018a) Review of the international evidence on support for unpaid carers, Journal of Long-Term Care, 2540. https://journal.ilpnetwork.org/issue/archive/

    • 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. (2006) Too important to ignore, PharmacoEconomics, 24(1): 3941. doi: 10.2165/00019053-200624010-00003

  • Brouwer, W.B.F. (2019) The inclusion of spillover effects in economic evaluations: not an optional extra, PharmacoEconomics 37(4): 451456. doi: 10.1007/s40273-018-0730-6.

    • Search Google Scholar
    • Export Citation
  • Brouwer, W.B.F., Van Exel, N.J.A., Van de Berg, B., Dinant, H.J., Koopmanschap, M.A. and Van den Bos, G.A.M. (2004) Burden of caregiving: evidence of objective burden, subjective burden, and quality of life impacts on informal caregivers of patients with rheumatoid arthritis, Arthritis and Rheumatism, 51(4): 5707. doi: 10.1002/art.20528

    • Search Google Scholar
    • Export Citation
  • Courtin, E., Jemiai, N. and Mossialos, E. (2014) Mapping support policies for informal carers across the European Union, Health Policy, 118(1): 8494. doi: 10.1016/j.healthpol.2014.07.013

    • Search Google Scholar
    • Export Citation
  • Department of Health and Social Care (2017) The Adult Social Care Outcomes Framework 2016/17, London. www.gov.uk/dh

  • Department of Health and Social Care (2018) Carers Action Plan 2018–2020: Supporting Carers Today, London. www.gov.uk/dh

  • Dixon, S., Walker, M. and Salek, S. (2006) Incorporating carer effects into economic evaluation, PharmacoEconomics, 24(1): 4353. doi: 10.2165/00019053-200624010-00004

    • Search Google Scholar
    • Export Citation
  • Forder, J.E., Malley, J.N., Rand, S.E., Vadean, F., Jones, K. and Netten, A.P. (2016) Interpreting outcomes data for use in the Adult Social Care Outcomes Framework (ASCOF), Canterbury: Personal Social Services Research Unit, University of Kent.

    • Search Google Scholar
    • Export Citation
  • Forder, J., Vadean, F., Rand, S. and Malley, J. (2018) The impact of long-term care on quality of life, Health Economics (United Kingdom), 27(3): e43e58. doi: 10.1002/hec.3612

    • Search Google Scholar
    • Export Citation
  • Goodrich, K., Kaambwa, B. and Al-Janabi, H. (2012) The inclusion of informal care in applied economic evaluation: a review, Value in Health, 15(6): 97581. doi: 10.1016/j.jval.2012.05.009

    • Search Google Scholar
    • Export Citation
  • Greenwood, N. and Smith, R. (2015) Barriers and facilitators for male carers in accessing formal and informal support: a systematic review, Maturitas, 82(2): 1629. doi: 10.1016/j.maturitas.2015.07.013

    • Search Google Scholar
    • Export Citation
  • Greenwood, N., Habibi, R., Smith, R. and Manthorpe, J. (2015) Barriers to access and minority ethnic carers’ satisfaction with social care services in the community: a systematic review of qualitative and quantitative literature, Health & Social Care in the Community, 23(1): 6478.

    • Search Google Scholar
    • Export Citation
  • Hoefman, R.J., Van Exel, J. and Brouwer, W. (2013) How to include informal care in economic evaluations, PharmacoEconomics, 31(12): 110519. doi: 10.1007/s40273-013-0104-z

    • Search Google Scholar
    • Export Citation
  • Hoffmann, F. and Rodrigues, R. (2010) Informal carers: who takes care of them?, http://citeseerx.ist.psu.edu/viewdoc/summary?doi=10.1.1.627.6793

    • Search Google Scholar
    • Export Citation
  • Kettunen, A. (2018) Supporting informal carers: testing feasibility of the CES and the Carer SCT4 measures as a part of care practice, paper presented at the Fifth International Conference on Evidence-Based Policy in Long-Term Care. 10th to 12th September 2018, WU Vienna University of Economics and Business, Vienna.

    • Search Google Scholar
    • Export Citation
  • 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 & Social Care in the Community, 21(3): 30314.

    • Search Google Scholar
    • Export Citation
  • Kingston, A., Robinson, L., Booth, H., Knapp, M. and Jagger, C. (2018) Projections of multi-morbidity in the older population in England to 2035: estimates from the Population Ageing and Care Simulation (PACSim) model, Age and Ageing, 47(3): 37480. doi: 10.1093/ageing/afx201

    • Search Google Scholar
    • Export Citation
  • Linnosmaa, I., Jokimäki, H. and Nguyen, L. (2019) Exploring Comparative Effectiveness and Efficiency in Long-term Care: Fieldwork Data Collection in Finland and Some Descriptive Findings, Helsinki: Diaconia University of Applied Sciences.

    • Search Google Scholar
    • Export Citation
  • Linnosmaa, I., Trukeschitz, B., Kruese, T., Hajji, A., Lien Nguyen, T., Malley, J., Razik, K. and Forder, J. (2018) Translation and cross-cultural validation of ASCOT instruments into German and Finnish, paper presented at the Fifth International Conference on Evidence-Based Policy in Long-Term Care, 10th to 12th September 2018, WU Vienna University of Economics and Business, Vienna.

  • Malley, J.N., Rand, S.E., Netten, A.P., Towers, A.-M. and Forder, J.E. (2019) Exploring the feasibility and validity of a pragmatic approach to estimating the impact of long-term care: the ‘expected’ ASCOT method, Journal of Long-Term Care, 6783. https://journal.ilpnetwork.org/issue/archive/

    • Search Google Scholar
    • Export Citation
  • McCabe, C. (2019) Expanding the scope of costs and benefits for economic evaluations in health: some words of caution, PharmacoEconomics, 37(4): 45760.

    • Search Google Scholar
    • Export Citation
  • Mueller, C.E. and Gaus, H. (2015) Assessing the performance of the ‘counterfactual as self-estimated by program participants’, American Journal of Evaluation, 36(1): 724. doi: 10.1177/1098214014538487

    • Search Google Scholar
    • Export Citation
  • Mueller, C.E., Gaus, H. and Rech, J. (2014) The counterfactual self-estimation of program participants, American Journal of Evaluation, 35(1): 825. doi: 10.1177/1098214013503182

    • Search Google Scholar
    • Export Citation
  • National Audit Office (2015) Care Act first-phase reforms, London. Department of Health and Social Care.

  • National Audit Office (2018) Adult social care at a glance, London. Department of Health and Social Care.

  • Netten, A., Burge, P., Malley, J., Potoglou, D., Towers, A.M., Brazier, J., Flynn, T., Forder, J. and Wall, B. (2012) Outcomes of social care for adults: developing a preference-weighted measure, Health Technology Assessment, 16(16): 1165. doi: 10.3310/hta16160

    • Search Google Scholar
    • Export Citation
  • NHS Digital (2010) Survey of carers in households 2009/10, Leeds: NHS Digital.

  • NHS Digital (2013) Personal social services survey of adult carers in England 2012/13, Leeds: NHS Digital.

  • Pickard, L. (2004) The effectiveness and cost-effectiveness of support and services to informal carers of older people, Literature review for the Audit Commission, London.

    • Search Google Scholar
    • Export Citation
  • Pickard, L. (2015) A growing care gap? The supply of unpaid care for older people by their adult children in England to 2032, Ageing and Society, 35(1): 96123. doi: 10.1017/S0144686X13000512

    • 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.

    • Search Google Scholar
    • Export Citation
  • Rand, S., Malley, J. and Netten, A. (2012) Measuring the Social Care Outcomes of Informal Carers: An Interim Technical Report for Identifying the Impact of Adult Social Care (IIASC), Canterbury: Personal Social Services Research Unit, University of Kent.

    • Search Google Scholar
    • Export Citation
  • Rand, S., Malley, J., Netten, A. and Forder, J. (2015) Factor structure and construct validity of the Adult Social Care Outcomes Toolkit for Carers (ASCOT-Carer), Quality of Life Research, 24(11): 260114. doi: 10.1007/s11136-015-1011-x

    • Search Google Scholar
    • Export Citation
  • Rand, S., Forder, J. and Malley, J. (2017) A study of dyadic interdependence of control, social participation and occupation of adults who use long-term care services and their carers, Quality of Life Research, 26(12): 330721. doi: 10.1007/s11136-017-1669-3

    • Search Google Scholar
    • Export Citation
  • Ritchie, J. and Lewis, J. (2003) Qualitative Research Practice: A Guide for Social Science Students and Researchers, London: Sage.

  • Schmitz, H. and Westphal, M. (2015) Short- and medium-term effects of informal care provision on female caregivers’ health, Journal of Health Economics, 42: 17485. doi: 10.1016/j.jhealeco.2015.03.002

    • Search Google Scholar
    • Export Citation
  • Twigg, J. (1989) Models of carers: how do social care agencies conceptualise their relationship with informal carers?, Journal of Social Policy, 18(1): 5366. doi: 10.1017/S0047279400017207

    • Search Google Scholar
    • Export Citation
  • Van den Berg, B., Fiebig, D.G. and Hall, J. (2014) Well-being losses due to care-giving, Journal of Health Economics, 35: 12331. doi: 10.1016/j.jhealeco.2014.01.008

    • Search Google Scholar
    • Export Citation
  • Van Houtven, C.H. and Norton, E.C. (2004) Informal care and health care use of older adults, Journal of Health Economics, 23(6): 115980. doi: 10.1016/j.jhealeco.2004.04.008

    • Search Google Scholar
    • Export Citation
  • Willis, G. (2005) Cognitive Interviewing: A Tool for Improving Questionnaire Design, London: Sage.

  • Winslow, B.W. (2003) Family caregivers’ experiences with community services: a qualitative analysis, Public Health Nursing, 20(5): 3418. doi: 10.1046/j.1525-1446.2003.20502.x

    • Search Google Scholar
    • Export Citation
  • Yamaguchi, M. and Rand, S. (2019) Issues and challenges in comparing carers’ quality of life in England and Japan: lessons from developing a Japanese version of the ASCOT-Carer, International Journal of Care and Caring, 3(3): 45964. doi: 10.1332/239788219X15597493546625

    • Search Google Scholar
    • Export Citation
Stacey RandUniversity of Kent, UK

Search for other papers by Stacey Rand in
Current site
Google Scholar
Close
,
Florin VadeanUniversity of Kent, UK

Search for other papers by Florin Vadean in
Current site
Google Scholar
Close
, and
Julien ForderUniversity of Kent, UK

Search for other papers by Julien Forder in
Current site
Google Scholar
Close

Content Metrics

May 2022 onwards Past Year Past 30 Days
Abstract Views 169 169 67
Full Text Views 393 393 0
PDF Downloads 124 124 0

Altmetrics

Dimensions