Research themes

Research themes tackled by the network include the following:

Caregiving and social and geographic diversity (lead: Nicki Ward)

Experiences of care, both for those being cared for and for those who are providing care interrelate with other life experiences and social characteristics. So whilst carers identify the importance of shared experience and having someone to talk to who understands what it is to care (Carers UK, Carers Trust), it is also important to understand the particularities of the caring experience in relation, for example, to age, ethnicity, gender, sexuality, disability and social situation.

Whilst these differing needs have been recognised it is often within the context that  little is known about some of these ‘groups’ of carers and that further research and support is needed (HM Government 2008; Devabhai, 2009; Willis et al, 2012; Hines, 2007). More recent work in this area has started to develop a theoretical understanding which considers how the experience of care may be understood intersectionally (Hankivsky, 2014; Ward, 2011; Ward 2015).

This theme aims to build on this existing body of work to explore and develop understanding about the interrelationship between social identity and relationships of care with a particular emphasis on understanding these experiences as intersectional considering what this means for policy and practice.  

References

  • Devabhai, N (2009) ‘A New Voice for Black and Minority Ethnic Carers’, The Guardian 22nd July 2009.
  • HM Government (2008) Carers at the Heart of 21st Century Families and Communities, London, HM Government,
  • Hankivsky, O. (2014) ‘Rethinking Care Ethics: On the Promise and Potential of an Intersectional Analysis’, American Political Science Review, Vol 108 (2) pp 252-264
  • Hines, S. (2007) ‘Transgender Care: practices of care in transgender communities’, Critical Social Policy, 27(4) pp 462-486.
  • Peters, H., Fiske, J., Hemingway, D., Vaillancourt, A., McLennan, C., Keith, B. and Burrill, A. (2010) ‘Interweaving Caring and Economics in the Context of Place: Experiences of Northern and Rural Women Caregivers’, Ethics and Social Welfare, 4(2) pp172 - 187
  • Price, E. (2010) ‘Coming out to care: gay and lesbian carers' experiences of dementia services’, Health and social care in the community, 18(2), pp. 160-168.
  • Willis, P., Ward, N. J. and Fish, J (2012) ‘Searching for LGBT Carers: mapping a research agenda in social work and social care’, British Journal of Social Work, Vol 412 pp1304-20
  • Ward, N. (2011) ‘Care Ethics and Carers with Learning Disabilities: a challenge to dependence and paternalism’, Ethics and Social Welfare  vol 28 (3) pp 237-52
  • Ward, N (2015) ‘Care Ethics, Intersectionality and Post Structuralism’ in Barnes, M., Brannelly, T., Ward, L. and Ward N. (2015) Ethics of Care: Critical advances in international perspective,  Bristol: Policy Press.

Caregiving as emotional labour (lead: Yvonne Sawbridge)

Emotional Labour is the process by which people manage their emotions.  Both informal and paid/professional carers clearly need to do this so that they can display the appropriate emotion for the situation, whatever their innermost thoughts or feelings are. The process of "Induction or suppression of feeling in order to sustain an outward appearance that produces in others a sense of being cared for.”(Hochshild 1983) is hard work- and rarely recognised. The invisibility of hard emotional labour contributes to the lack of support afforded to those individuals required to do this as part of a caring role. Our research aims to raise the profile of emotional labour as a role requirement for those working as health and social care professionals, and support the development of support systems which reduce the negative impact of emotional labour on those carers.

Resources/References

  • Hochshild AR. (1983) The Managed Heart: Commercialization of human feeling. Berkley, University of California Press.
  • Sawbridge Y and Hewison A (2013) Thinking about the emotional labour of nursing-supporting nurses to care.  Journal of Health Organization and Management 27 (1), 127-133.

What a TEDx presentation on Emotional Labour

Caregiving, health and well-being; caregiver burden (lead: Anna Phillips)


The interrelationships between caregiving, health and well-being are being researched from a variety of perspectives in psychology, medicine and the social sciences.

One aspect of this research is that caregiving for a sick or disabled relative has frequently been employed as a model for examining the effects of chronic stress on psychological wellbeing and physical indices of health, such as measures of immune function.  Caregiving has been chosen as a model of chronic stress due to the increasing number of caregivers and the large amount of evidence for an influence on psychological and physical wellbeing and quality of life among caregivers.  Research at the University of Birmingham is addressing psychological stress and burden levels and a range of physical health outcomes include measures of immune function, stress hormones, and self-reported illness occurrence among carers and age- and sex-matched controls (non-carers) in order to understand the extent to which caregiving can influence health.  This research is focused on younger as well as older carers in order to understand the interactions between caregiving, ageing and health, as well as specific key groups of carers e.g., spousal carers for a partner with dementia and parents of children with intellectual disabilities.

A different perspective based in the social sciences uses national and locally collected data to examine how health and well-being are affected by participation in caregiving. This research considers whether and how such relationships are influenced by aspects such as whether or not caregiving is co-residential, whether it is more or less time intensive, the degree of choice in the caregiving relationship and the age and gender of caregivers.  Research at the University of Birmingham is also examining how participation in caregiving impacts on health and well-being over life courses.

Caregiving impact and outcomes for the cared-for (lead: Louise Isham)

The impact of care and caring is a central concern of caring research across different disciplines and current debate about future research directions. From the 1990s, a significant body of research has focused on evidencing the associations between caring and a range of health, social and economic outcomes. This research has helped to identify the once ‘hidden’ dimensions of caring and to highlight the significant contribution that informal carers make in economic and social terms (Corry, 2015; Carer’s UK, 2015). This work has also shaped the conceptual and empirical landscape of much contemporary research on caring.  It has established key ideas relating to measuring and identifying the impact of care on caregivers and its association with stress, burden and lower quality of life (Milne, 2015).

Current research examines how the impact of care is thought about and studied from new directions.  Psychological, health and social sciences approaches highlight the importance of examining how people involved in the practice of care understand and make sense of their experiences.  It is suggested that a better appreciation of people’s subjective views is linked with a better understanding of the psychosocial and emotional impact of care, including its benefits (Horrell, 2014). Other research highlights that people can be involved in periods of giving and receiving care over their life-course and their role as carer or care receiver are often fluid (Barnes, 2015).  This is particularly the case in intimate and family relationships where practices of love, obligation and inter-dependency challenge the idea of a clear distinction between caring roles (Molyneaux, 2011).  It also questions the suitability of only looking at the impact of care in terms of stress and burden on caregivers (Brown, 2014).  

This theme aims to explore and develop understanding about the nature and impact of family care on those involved in its practice.  We are particularly interested in understanding how care and caring change over time and within different family systems. We are also interested to explore the nature and impact of violence and abuse within caring relationships.

References

  • Barnes, M., Brannelly, T., Ward, L. and Ward, N. (eds.) (2015 ) Ethics of care: Critical advances in international perspective, Policy Press: Bristol.       
  • Carers UK (2015) Facts about carers, Carer UK.
  • Corry, M., et al. (2015) "A systematic review of systematic reviews on interventions for caregivers of people with chronic conditions" Journal of Advanced Nursing 71(4): 718-734.                     
  • Horrell, B., et al. (2015). "Capability to care: Supporting the health of informal caregivers for older peopl." Health Psychology 34(4): 339-348.
  • Milne, A. and M. Larkin (2015). "Knowledge generation about care-giving in the UK: a critical review of research paradigms" Health & Social Care in the Community 23(1): 4-13.
  • Molyneaux, V. et al. (2011). "Reconsidering the term ‘carer’: a critique of the universal adoption of the term ‘carer’" Ageing & Society 31(03): 422-437.

Carers' voices (lead: Joy Fillingham)

For further details of this research theme, visit the carers' voices webpage.

Measuring and valuing carers’ quality of life (lead: Hareth Al-Janabi)

Further details on this research theme will be available soon.

Unpaid caregiving and trade-offs with paid work over life courses (lead: Fiona Carmichael)

The policy context for this theme is population ageing which has created an imperative to extend working lives and is projected to lead to extra demands on health and caring services (HSCIC, 2014). At the same time there has been increased political emphasis on patient choice and the provision of care in the home. This combination is likely to increase the demand for both formal and informal care at home (Pickard et al., 2007; Wittenberg et al., 2011). Whether projected rises in demand for informal care will be met is difficult to know: caregiving already draws in 38.74 percent of the UK adult population at some point during their lives (Carmichael and Ercolani, 2016). As working lives extend, the time available to provide care is being constrained and pressures to combine caregiving and work are likely to increase. In this context, understanding how unpaid caregiving and paid work are interlinked is crucial and there is a growing body of international evidence of the conflicts and trade-offs between caregiving and paid work at a moment in time or over a short-term (Michaud et al., 2010; Carmichael et al., 2010; Heitmueller, 2007; and see Lilly et al., 2007 for a review).  However, individual decisions about caregiving are unlikely to be made in a social or historical vacuum and may be made far in advance of a need arising. There is therefore a need to explore the dynamic nature of relationships between caregiving, employment and family context over life-courses (Carmichael and Ercolani, 2016; Jacobs et al. 2014; Moen and Sweet, 2004). This theme contributes to this developing research literature using mixed methods focussing on longitudinal studies to enable further understanding of how caregiving trajectories and trade-offs evolve over time.

References

  • Carmichael, F. and Ercolani, M. (2016) Unpaid caring and paid employment: different life-histories and divergent outcomes, Social Science and Medicine, doi:10.1016/j.socscimed.2016.03.020 (ABS 4*; Impact factor 2.341)
  • Heitmueller, A. (2007). The Chicken or the Egg? Endogeneity in the Labour Market Participation of Informal Carers. Journal of Health Economics 26(3):536-559.
  • HSCIC (The Health and Social Care Information Centre). (2014). Hospital Episode Statistics. Accessed 04/10/2014 at www.hscic.gov.uk/home.
  • Jacobs, J.C., Laporte, A., Van Houtven, C.H., Coyte, P.C., 2014. Caregiving intensity and retirement status in Canada. Social Science & Medicine 102(C):74–82.
  • Lilly, M. B., Laporte, A. and Coyte, P. C. (2007). Labor Market Work and Home Care’s Unpaid Caregivers: A Systematic Review of Labor Force Participation Rates, Predictors of Labor Market Withdrawal, and Hours of Work. The Milbank Quarterly, 85(4):641-690.
  • Michaud, P., Heitmueller, A. and Nazarov, Z. (2010). A Dynamic analysis of informal care and employment in England, Labour Economics, 17:3, 455-465.
  • Moen, P. and Sweet S. (2004). From 'Work-Family' to 'Flexible Careers': A Life Course Reframing, Community, Work, & Family 7:209-226.
  • Pickard, L., Wittenberg, R., Comas-Herrera, A., King, D. and Malley, J. (2007). Care by spouses, care by children: projections of informal care for older people in England to 2031, Social Policy and Society 6(3):353-366.
  • Wittenberg R, Hu B, Hancock R, Morciano M, Comas-Herrera A, Malley J, King D. (2011). Projections of Demand for and Costs of Social Care for Older People in England, 2010 to 2030, under Current and Alternative Funding Systems, Report to the Commission on Funding of Care and Support, Accessed 27/09/2015 at http://www.pssru.ac.uk/archive/pdf/dp2811-2.pdf.

Young carers and young adult carers (lead: Feylyn Lewis)

In the United Kingdom, there are an estimated 700,000 children and 350,000 young adults who provide unpaid care, assistance and support for another family member (BBC, 2010; Carers Trust, 2016). Much work has progressed over recent decades to raise the profile of young carers and young adult carers in research, policy, and in society at large. However, there remains a great need for widespread recognition and continued support for young people with caregiving roles, particularly for those considered to be “hidden”, i.e., not in contact with support services. This research theme is committed to building increased awareness of the needs of Black and Minority Ethnic carers, those living in rural areas, those in the traveller, refugee, and recent immigrant communities, and those who identify as LGBT.

The experience of young carers in schools merits much attention as 68% of young carers report that they have been bullied, and 27% of young carers miss days at school due to caregiving responsibilities (Carers Trust, 2016). Young adult carers are at particular risk for being NEET (not in education, employment, or training). Current research at the University of Birmingham is examining the ways young adult carers navigate the life domains of education, careers, and interpersonal relationships, as well as how to best support them as they transition to later stage adulthood.

The impact of the new legal rights afforded to young carers and young adult carers through the 2014 Care Act and Children and Families Act remains unclear. Schools, colleges, and universities, NHS service providers, and those working in children and adult social services are in a unique position to work collaboratively to identify and support young carers and young adult carers. This research theme recognizes the importance of best practice models across sectors and seeks to explore new ways of working together.

TEDx presentation on Hidden Young Carers with Professor Saul Becker

BBC (2010). Number of child carers ‘four times previous estimate’. BBC News. Accessed 10/07/16 at http://www.bbc.co.uk/news/education-11757907.

Carers Trust (2016). Key facts about carers and the people they care for. Accessed 10/07/16 at https://carers.org/about-caring.