Moving care from a marginal position to a central one in order to move forward

As a final year Law student undertaking research for a dissertation on how ethics might affect the law surrounding the adult social care system, I have become aware of the marginalisation of those within the system. While studying for another module I was shocked to read that the authors considered that Dr Harold Shipman had managed to kill over 200 of his older patients without suspicion being raised simply because they belonged to a group considered ‘low value’ by society.

Uncomfortable though this suggestion is, there may well be significant truth in it. Utilitarian policies, directing resources to the majority without evaluating the needs of individuals, attach labels to groups which enable local authorities to deliver a blanket, one size fits all service. It does not take a huge amount of research to realise that the growing older population, who are benefiting from free health care and scientific progress on one hand, are being failed on the other because their need for good, basic care is not being addressed adequately.

Liberal policies which place focus on autonomy, such as individual budgets [1] have increasingly pushed service users into becoming employers and accessing the services they need for themselves.  While this might seem attractive in theory, it can be difficult in practice. As Ann Marie Mol [2] discusses, having more choice does not always lead to better health care and care is best when it works collaboratively and in recognition of the complexities of individual lives. Unfortunately, in the realm of adult social care, this emphasis on choice has led to government being able to look away from those who need support.

As Luke Clements [3] argues, there are questions whether personal budgets actually address the needs of many older people in practice. This is further compromised by the fact that they do not have any choice in whether they really want to have this level of responsibility in the first place. It is not necessarily easy or practical to have to arrange personal care and this is further affected by fluctuations in charges depending on where a person lives.

Lucy Series and Luke Clements [4] argue that resource allocation systems lack transparency in some areas with regard to what criteria are used to ascertain needs. The law centres on personal assessments which can generate budgets which are not sufficient to meet the requirements of service users. This is further affected in cases where some level of care is provided by family or friends. These informal carers are also not recompensed adequately (if at all) by government for what they do, nor are their broader needs and commitments, perhaps work or family life, addressed properly. This presumption that care should take place within the private spheres of home and the family again allows those in power to look away.

Care needs to be positioned centrally within both politics and society in order that carers are valued appropriately and they receive the support they deserve. When this happens we can begin to build upon it and progress to delivering excellent care for everyone, using resources and time to their fullest potential.

Laura Wares is a Mature final year Law student at the University of Kent, currently researching for a dissertation around the subject of the ethics of Adult Social Care. She can be contacted via:

LinkedIn

or

Kent Law School
Eliot College
University of Kent
Canterbury
Kent
CT2 7NS
United Kingdom


[1] Ann Stewart, ‘Choosing care – dilemmas of a social market’, 2005.
[2] ‘The logic of care: health and the problem of patient choice’, 2008.
[3] ‘Social Care Law Development: A Sideways Look at Personalisation and Tightening Eligibilty Criteria’, 2011.
[4] ‘Putting the cart before the horse: resource allocation systems and community care’, 2013.

 

‘Dangerous Care’ by Ann Stewart

Last week, three care workers from Hillcroft nursing home were jailed and a fourth given a community sentence for tormenting and abusing elderly residents with dementia. Their actions were described by the trial judge as “gratuitous sport at the expense of vulnerable victims”.  This high profile case adds to a depressing list of abuse of frail elderly and vulnerable people amounting in many instances to criminal behaviour on the part of care workers.

This blog is a personal reflection on these events although I do have an academic interest in body work and the regulation of care.  My first reaction when I read or see the coverage is to feel sick.  I am taken back instantly to the emotions I experienced in relation to my own parents.  They lived until their late 80s together in their council bungalow in a village until my mum’s physical health deteriorated significantly.  Dad was not able to look after her adequately and I took over responsibility for them.  Eventually they came to live with me and for two years or so I became immersed in the world of ‘care’ – high intensity emotional contexts, exhaustion and persistent low level frustration caused by every day events coupled with constant anxiety about their wellbeing.  I hated to think of their vulnerabilities being exposed.  I wanted everyone around them – care workers, nurses, my friends, neighbours and adult children to see them for what they were – simple ordinary people – nothing special – at the end of their lives.  I wanted people to like them – to see through all the stuff that comes with frailty in old age – and to treat them well and with respect.  I can’t bear to think about what has happened to people like my mum and dad, although neither had the added vulnerability of dementia in the situations described in these cases. I am of course not alone in this – the relatives and friends of those who experienced the abuse say the same: they are angry and feel guilty.  I understand the guilt while recognising that it is inappropriate.

My second reaction focuses on the pictures of the workers, described as bullies, monsters, callous and hard hearted and a disgrace.  I find it difficult to join in the ‘how could they?’ responses.  I was constantly anxious about the demands that my mother in particular presented to those who cared for her.  I worried all the time that they were unreasonable – I often found them unreasonable when I was doing the caring – while at the same resisting this way of thinking about her – why was I expecting her to be reasonable?  What did that mean – complying with my idea of what she wanted or needed?  I would mentally grit my teeth, draw on a joint history (not uncomplicated) and my love for her and find a way through although I would feel furious at times.  I didn’t always stop myself saying and doing callous things or neglecting her.  But how would those who only knew her in this last stage of her life, and through a work relationship, cope?  What did I expect of them?  What was reasonable?

I hoped to manage relationships between care workers and my parents and between the care workers themselves (we always had a minimum of 2 at any one time because of the complex needs of my mother) by throwing as many resources as possible at the situation – decent wages and generous conditions – plenty of substantial and paid breaks away from her during working hours, long holidays, constant attention to individual worker’s needs and pressures,  flexible arrangements between the workers themselves and so on.  I am no saint. I wanted the arrangements to work.  I liked all the people involved.  I could be ‘generous’ because my parents received substantial financial support through direct payments at that time because my dad had been a farmer worker and they had no assets.  I could add to this from my professional salary.  I lived in a very large house with a big garden providing ‘space’ for workers.  It was still far from easy.  Tensions between workers would emerge which had to be sorted out.  But by having a mix of part time postgraduate students, full time directly employed workers and some agency workers coming in at peak times we managed somehow.

I look at the pictures of the ‘homes’ that always seem to accompany the reports of these institutional abuse cases and think about the financial and managerial regimes that underpin them.  The reports provide glimpses of the position of the care workers – often from marginalised groups in society, under pressure, vulnerable, untrained, unsupported and under-resourced – and I can see how the abuse happens quite easily and I find it hard to join in the general condemnation while sharing the anger at what has happened.

It seems to me that we as a society abuse these workers and when they abuse others we send them to prison. We create a ‘moral panic’ about institutional care and put these body workers at its heart.  Labour law seems totally unable to provide an adequate framework for protecting care workers and for managing these really difficult relationships.   The structural problems associated with the commodification of caring particularly in a context of ‘austerity’ are being mis framed as the individual responsibility of marginalised workers within the law. These workers’ (often physically and emotionally exhausted) culturally identified bodies are made invisible for these purposes while increasingly made subject to surveillance by managers and regulators through other forms of regulation deemed necessary to prevent the abuse which results from the means through which such care is provided.  The state punishes them for our collective lack of responsibility.

Ann Stewart, School of Law, University of Warwick, Coventry CV4 7AL, UK 

The Liverpool Care Pathway Controversy: Time to Revisit the Ethics of Care?

Back in July an Independent Review headed by Baroness Julia Neuberger published a report into the controversy over the use of the Liverpool Care Pathway (LCP) – a holistic plan for care of dying patients, within the acute hospital sector (Neuberger 2013) This came in the wake of a long line of recent enquiries into the standards and practices of care within the healthcare sector (Francis 2013, Patients First 2013, Keogh 2013) and in response to media headlines such as “Distraught families allege that the NHS protocol designed to allow the terminally ill ‘a good death’ is being abused” (The Telegraph 29 October 2012).

The LCP had originally been developed by the Royal Liverpool University Hospital and the Marie Curie Hospice Liverpool in the late 1990s, for the care of terminally ill cancer patients. It comprises of 10 key elements, including a recognition that the patient is dying; communication with the patient and relatives; spiritual care; reviews of medication, nutrition and hydration; and collaboration and shared decision-making. All of which are intended to be guidelines that aim to support, but not replace, clinical judgment (Ellershaw 2013, 2).

The controversy centres around the conflict between the recognition of the LCP as a model of good practice, (NICE 2003, 2006) and the findings of the Review that in reality incidents of poor treatment – “uncaring, rushed, ignorant – abound” (Neuberger 2013, 3). The title of the Review, “More Care, Less Pathway” neatly sums up its flavor. It concludes that patients were often treated with less respect than they deserved, with the use of the LCP being reduced to a “tick box exercise” and that communication with the families was inadequate or entirely absent (Neuberger 2013, 3-4).

This tension between laudable intention and implementational failure generates questions about how policy and law can effectively promote practical and realistic care practices and yet remain sensitive to the myriad of vulnerabilities experienced in the face of death. This is all the more pertinent in relation to dying, where care’s traditional preservative purpose is subverted, so that care not only reaches beyond survival but entirely precludes it. Further, the aim of the LCP to “ensure that uniformly good care is given to everyone, wherever they are (…)” (Neuberger 2013, 12) brings into sharp focus the socio-spatial notion of caring (Johnsen et al 2005). This examines the potential of such ‘caring spaces’ as the hospital, to accommodate the apparent merger between the private and the public, the intimate and institutional in the care of the dying. This in turn raises the question not only of institutional support and time for care (Groenhout 2004) but also of whose role it is to care, which feeds into the wider debate surrounding the education and training of doctors and nurses.

It seems evident that the absence of both the virtues (Engster 2005, 55) and practices proclaimed by the advocates of the Ethics of Care, such as a recognition of the relational self (Gilligan 1982), the need for particularist solutions (Bowden 1997) and a recognition of the ‘expertise’ that can arise as a result of practical engagement in caring practices (Ruddick 2009,) were instrumental in the failure in implementation of the LCP. Problems such as poor communication, with “brutal and callous” language being used by clinicians when speaking to relatives about the patient (Neuberger 2013, 25), may be remedied with training. Yet a recognition of the patient’s ‘relational autonomy’ (Nedlesky 2011) in order to foster practices of shared decision-making, or the over-coming of the apparent taboo that even healthcare professionals feel in speaking about death, (Neuberger 2013, 21) may require a more significant change of culture.

One wonders how other, more subtle aspects of the Ethics of Care as it relates to the process of dying, might be feasibly accommodated within institutional practice. How could notions of the embodied experience of the dying patient, which would provide an anchor to the notion of particularity in care, (Fox and Murphy 2013, 13) be recognized? The current link between the LCP and embodiment is a paradoxical one, with the physical body at once occupying the place as its central object, yet silenced by the routine and often unexplained use of heavy sedation and the withdrawal of nutrition and hydration, causing great distress to the relatives (Neuberger 2013, 24). Likewise the accommodation of aspects of spiritual care, such as the importance of religious and cultural aspects of dying, or the desire to place remaining lucid above pain relief in order to cherish time with their relatives (Neuberger 2013, 24). Could a caring response that may even require a retreat from the desire to minimize suffering, ever be countenanced? A recent example is found in the case of VT, a 72 year old devout muslim man whose family argued that their father, for whom they had cared devotedly for 10 years, would want his life preserving for as long as possible, even if he was suffering, as he would view that suffering as an opportunity for purification in preparation for the next life (The Guardian 13 November 2013).

Ultimately, the final recommendation by the Review that the LCP be phased out by July 2014 and be replaced by personalised care plans for each patient, backed up by condition-specific guidance (Neuberger 2013, 48) is surely right. The potential for us and our loved ones to die in accordance with our own view of a ‘good death’ is an appealing one. Yet the Review is also right that a system wide-change is needed to improve end-of-life care, and still one wonders how institutional mechanisms operating under such a nuanced and sensitive approach will be either practical or feasible?

Kirsty Moreton – Birmingham Law School, University of Birmingham.   KLM180@bham.ac.uk

 As a result of the Review, the Leadership Alliance for the Care of Dying People (LACDP) has been set up to respond to the Review’s recommendations and publish a system-wide response, primarily focusing at this stage on clinical practice. Its Engagement Document is still open for consultation until 6 January 2014 https://www.engage.england.nhs.uk/consultation/care-dying-ppl-engage.

References:

-           Bowden, Peta. 1997. Caring: Gender Sensitive Ethics. Routledge.

-           Ellershaw, John. 2013. Statement regarding LCP Review Publications. Marie Curie Palliative Care Institute, Liverpool. www.mcpcil.org.u

-           Engster, Daniel. 2005. ‘Rethinking Care Theory: The Practice of Caring and the Obligation to Care’ 20(3) Hypatia 50.

-           Fox, Marie and Murphy, Therese. 2013 ‘The Body, Bodies, Embodiment: Feminist Legal Engagement with Health’, in Davies, Margaret and Munro, Vanessa. (eds) The Ashgate Research Companion to Feminist Legal Theory. Ashgate 249.

-          Gilligan, Carol. 1982 (2nd edn 1993) In a Different Voice: Psychological Theory and Women’s Development. Harvard University Press.

-          Groenhout, Ruth. 2004. Connected Lives: Human Nature and an Ethic of Care. Rowman and Littlefield.

-          Johnsen, Sarah: Cloke, Paul; May, Jon 2005 ‘Day Centres for Homeless People: Spaces of Care or Fear?’.

-          Nedelsky, Jennifer. 2011. Law’s Relations: a Relational Theory of Self, Autonomy and Law. OUP

-          Neuberger, Julia. 2013. More Care, Less Pathway: A Review of the Liverpool Care Pathway. Independent Review of the Liverpool Care Pathway.

 -          Ruddick, Sara. 2009. ‘On Maternal Thinking’ 37 (3&4) Women’s Studies Quarterly 306.

 

Rethinking Age in the Context of Care

Age- and stage-based assumptions are deeply embedded in care models and across care practices (Grenier, 2012). Whether care is used to refer broadly to a concept, institutional and organisational practices, or to denote relationships between families and older people, age and care are intricately intertwined. This entry focuses on care provision as a site from which to consider the intersections of age and care, and whether current models are in line with older people’s needs, and the new realities of ageing. Care is often linked with discourses of dependence, and paradoxically associated with potential in youth, and decline in age (see Irwin, 1995; Gullette, 2004). In late life, care tends to be delivered based on age eligibility. Yet, with age and what it ‘means to grow old’ an increasingly contested terrain, it is time to reconsider how age is enacted or sustained through care practices, and consider whether age-based models of care are suitable in the contemporary context.

 

A number of complexities exist when we begin to unpick age and the organisation of care. Formal care provision tends to be delivered through age-based segments of youth and old age. Few formal care services are life-long. Yet, the separation of the life course into age- and stage-based periods, age as an organising principle, and former notions of ageing as decline have been called into question (Featherstone and Hepworth, 1991; Hockey and James, 2003). At the level of personal experience, older people voice that ‘they are not old’ – that the age they are assigned contrasts with their experience and sense of self (see Kaufman, 1986; Bytheway, 2011). This has created a disjuncture where suggested models and expectations are concerned, as well as an alignment with new forms of ageing that emphasise success, health and well-being (see Katz, 2005). And while universal understandings of age are quickly being unravelled, undeniable needs for care amongst older people continue to exist. Older people may need care at various points across their life course as a result of disability or chronic illness, ‘frailty’ or end of life issues, and/or at particular marginalised locations (e.g., poverty, older homelessness). Yet, are such needs for care age-based?

 

We are at a crossroads where the age-based provision of care is concerned. Although reconfigurations of policy based on chronological age are underway (e.g., public pension), current examples focus on age adjustments, rather than on differing needs or alternate arrangements. Perhaps the retention of age is prudent considering the realities of ageism, reconfiguring age to reduce social expenditure, and the structured inequities in late life (see Gee and Gutman, 2000). However, the contemporary context calls for reflection at minimum. How do we catch up with emerging realities of aging and adjust the organisation of care accordingly? Should age be used to organise care services? If so, in what circumstances? If not, how can we assure that those in need are not further marginalised? Such questions represent a starting point from which to reconsider age-based models of care, question underlying assumptions, and reconfigure care practices so that they are more aligned with changing notions of age and contemporary care needs.

 

Amanda Grenier, PhD, Associate Professor, McMaster University

email: amanda.grenier@mcmaster.ca

twitter: @amanda__grenier

 

References:

Bytheway, B. (2011). Unmasking age: the significance of age for social research. Bristol: The Policy Press.

Featherstone, M., and Hepworth, M. (1991). ‘The mask of ageing and the postmodern lifecourse’ In M. Featherstone, M. Hepworth and A. Wernick (eds) Images of ageing, London: Routledge.

Gee, E. M., and Gutman, G. M. (2000). The overselling of population aging: apocalyptic demography, intergenerational challenges, and social policy, New York: Oxford University Press.

Grenier, A. (2012). Transitions and the lifecourse: challenging the constructions of ‘growing old‘. Bristol: Policy Press.

Gullette, M. M. (2004). Aged by culture, Chicago: University of Chicago Press.

Hockey, J., and James, A. (2003). Social identities across the lifecourse, Houndmills: Palgrave MacMillan.

Irwin, S. (1995). Rights of passage: social change and the transition from youth to adulthood,  London and Bristol: UCL Press.

Katz, S. (2005). Cultural aging: life course, lifestyle, and senior worlds, Peterborough, ON: Broadview Press.

Kaufman, S. (1986). The ageless self: sources of meaning in late life, Madison: University of Wisconsin Press.

 

Sexual identity and care home provision: some reflections on the research process

My colleagues and I at Swansea University have recently completed a mixed-methods study into the provision of inclusive care to older lesbian, gay and bisexual (LGB) people in residential and nursing care environments in Wales – an elongated title for saying, ‘how well are older LGB recognised and cared for in care homes?’ We know from the literature that heterosexism in residential care provision can mask the sexual health needs, diversity and desires of older LGB residents. Prior research from Australia and the United States has identified institutional and historical barriers that prevent older people ‘coming out’, or identifying as LGB to care providers (Barrett, 2008; Jackson, Johnson & Roberts, 2008; Knockel, Quam & Croghan, 2010; Tolley & Ranzijn, 2006). Our research was funded by the National Institute for Social Care and Health Research (NISCHR) and had a unique focus on Wales as a UK nation with devolved responsibility for providing health and social care to its citizens, including older people. Residential and nursing homes (private and local authority-owned) from across Wales took part. Two methods were used to gather staff perspectives on inclusive care —self-completed questionnaires (121 respondents), and focus groups with care staff and managers (5 groups) from 32 organisations. Other methods included: content analysis of Care and Social Services Inspectorate Wales (CSSIW) Inspection reports (383 reports) to identify content pertaining to sexuality, sexual health and LGB identities; and, semi-structured interviews with 29 older LGB-identifying adults about their hopes and expectations for future care. The final report is available online and provides an overview of the key findings and recommendations: http://www.swan.ac.uk/humanandhealthsciences/research/research-impact/lgb-residential-care-report/

What follows are some brief reflections on the process of involving care organisations in the research – reflective comments on the research process that do not always make the final edit of reports and papers but may help steer future research in this domain.

Willingness to participate and learn – We initially anticipated that seeking care home participation would be the biggest challenge in recruitment because of the politically-charged nature of the topic and our concern that staff and managers would interpret our research endeavours as a critical appraisal of their practice.  Instead, we were struck by the enthusiasm of staff and managers to participate. Using a random sampling method, we invited 51 organisations to participate with 19 declining. Most of these homes declined because of impeding closures that created logistical barriers to their involvement. For some staff groups, participation in a focus group was framed as an informal learning opportunity into an area that receives little time and attention, an unexpected but positive outcome. Across focus groups, there was general agreement of a ‘need to know more’ about sexual difference and LGB histories. Participating staff members conveyed an awareness of progressive shifts in legislation and social attitudes but in equal measures expressed a willingness to be more mindful of the sexual biographies of residents in their care.

Sexuality, dementia and everyday care – While our research focused on sexual identity and social inclusion, a connected and equally pertinent topic that frequently emerged in focus groups was the complexity of balancing issues of sexual expression, dementia and informed consent. Staff elaborated on the challenges of negotiating sexual relationships and intimate contact between residents with declining mental capacity alongside responding to the often divided opinions of family members. Listening to these accounts of complex care deepened our appreciation for staff members’ commitment to respecting the rights and choices of residents in their care and to continually ‘do the right thing’. It also brought home the ethical complexity of providing care in these settings for employees who were in receipt of a low financial reward just above the minimal wage with little professional recognition.

Missing voices from the research – Staff views and accounts conveyed through the research represent predominantly White perspectives. The majority of participating staff and mangers were white, heterosexual women born in Wales and of mainly Christian background. This clearly did not match our observations of staffing groups when entering homes – we noticed many participating homes employed staff from black and ethnically diverse groups, including individuals from African and Asian migrant communities. We were limited to the staff available to speak to us between rotating shifts and group membership was often facilitated by senior staff members operating as ‘gatekeepers’ for their organisations. It is difficult to pinpoint whether individual staff from migrant and ethnically diverse communities opted not to participate for personal or religious reasons or whether they were not approached to participate; we can only speculate about possible barriers to participation. Ethical requirements prevented us from actively approaching individual staff to participate. Finally, we did not anticipate the eagerness of ancillary staff members (such as cleaners, kitchen staff etc.) to have a say in the research. It became increasingly clear that their various duties involved regular contact with residents and their views were of equal importance in the provision of inclusive care. We confess to underestimating the validity and contribution of these staff members’ perspectives; food for thought for future research.

I hope the above reflections are of some benefit to other researchers and practitioners engaged in research in an area of increasing interest. Putting these observations to paper has been valuable for me in capturing the often sidelined messages about research into organisations providing care to others.

Barrett, C. (2008). My People: A project exploring the experiences of gay, lesbian, bisexual, transgender and intersex seniors in aged-care services Retrieved 16th October 2009, from http://www.matrixguildvic.org.au/MyPeopleReport2008.pdf

Jackson, N.C., Johnson, M.J. & Roberts, R. (2008). The potential impact of discrimination: fears of older gays, lesbians, bisexuals and transgender individuals living in small- to moderate-sized cities on long-term health care. Journal of Homosexuality, 54(3), 325-339.

Knockel, K.A., Quam, J.K. & Corghan, C.F. (2011). Are Old Lesbian and Gay People Well Served? Understanding the Perceptions, Preparation, and Experiences of Aging Services Providers. Journal of Applied Gerontology, 30(3), 370-389.

Tolley, C. & Ranzijn, R. (2006). Predictors of heteronormativity in residential aged care facilities. Australasian Journal on Ageing, 25(4), 209-214.

About the author: Paul Willis is Senior Lecturer in social work in the College of Human and Health Sciences at Swansea University. His research interests include ageing, sexuality and social care; wellbeing and identity construction of LGBT youth; and social inclusion in organisations. Email: P.B.Willis@swansea.ac.uk

‘Care and Technology’ by Helen Carr

Last month I attended the 4S conference in San Diego, (the Society for Social Studies of Science in case you were wondering) along with about 1000 others.  Whilst I heard some good papers – I particularly enjoyed the panel on Calculating City Life: A Socio-Material Perspective to Low-Budget Urbanity which included papers on ride sharing and ecosan communities – I was struck, and disappointed, by the very limited focus on gender, sexuality and caring. The title (and what a great title) No Space for Old Women: Transformations in Healthcare Work was promising, but the presentation concerned women who had become nurses in the 70’s and who now felt edged out of the profession by the increasingly technological nature of their work. Interesting stuff, but, as far as I could tell, the feminism that was promised in the introduction to the paper, lay in the fact that the research subjects were women. This is perhaps unfair; when I read the full paper (and I promise I will) it may be more developed. I was amused though, when I asked the presenter to expand upon her feminist perspective, I was answered by a young man in the audience who told me it was self evident.  Women who entered work in the 1970s were all feminist pioneers apparently, since most women stayed at home and looked after their families.  It was hard to restrain myself from replying, ‘young man, I don’t think you are in a position to lecture me about feminism in the 1970s’ but I just about managed!

Many papers were concerned with surveillance, and the consequences of technology on our freedoms. Whilst these are important and topical concerns, there was a tendency to rehearse traditional liberal arguments, treating the state as one homogenous entity and technology as irredeemably bad. There was little deviation from this perspective, and I got the feeling that if someone said, well perhaps some communities want more surveillance, or technology can be a force for good, they would have been shouted down.  Moreover the panels were very gendered.  Young men, strutting their stuff, and congratulating themselves and each other on their (very similar) insights.  What a pleasure it was to hear Evelyn Ruppert from Goldsmiths introduce her empirical work on statisticians in the European Union and explain how people and institutions deploy ‘technologies of trust’ to give legitimacy to unstable and contested political projects such as the notion of Europe. Her ideas felt very productive to me.

Of course this is just a snap shot of the panels I went to.  It could just be that I made really poor choices (although I did comb the programme for references to care).  And I should probably have gone to ‘Feminist Postcolonial Science Studies: What are the Issues?’, chaired by Sandra Harding and Banu Subramaniam, but how could I resist a paper on baboons apparently making pets out of kidnapped feral dogs (for those of you interested here is the Youtube link http://www.youtube.com/watch?v=U2lSZPTa3ho – one million hits and rising!) which was on at the same time.  Just in case there is any doubt, as a result of that choice, as to my academic engagement, I would point out that I chose the paper on no-flush toilets over and above ‘Scotch Malt Whisky Tasting and Subjectivity Science in the Making: A Participatory Experiment’ where apparently the first 60 delegates got a whisky sample!

I reached two conclusions following the conference.  First, and this is a bit self-congratulatory, how much more productive was our workshop in Adelaide, when a wide range of papers were delivered, across our themes, and where the discussion was critical, constructive and engaged.  The workshop format really seems to work to develop shared intellectual capital in a positive and enjoyable way.

The second is to reflect on the contemporary importance of the relationship between care and technology which seems to be undertheorised.  I would suggest that once we start thinking about technology from the perspective of care, then the ambivalence of technology becomes apparent. Whilst I was in Adelaide, I had dinner with a woman who was originally from London. Her father was in a home in London and had a tendency to wander.  He was given a walking stick with a GPS tracing device, and she was able to follow his wanderings round London on her computer. Is technology in this instance increasing or decreasing her father’s autonomy, well being, dignity and privacy? What does it do to our understanding of family, and of rights and obligations? The invention of super-absorbent sheeting can be liberating, but can also be undignified and lead to a life isolated from human contact. Is it caring to be able to provide them to someone who is functionally, although not medically incontinent? Is technology absolving us of our responsibility to care? There is a huge amount to think about so it may be that the 4S conference would be a great place for our Revaluing Care network to squat, or at least to make its presence felt. So is anyone up for a panel or two in Buenos Aires August next year? Or perhaps more realistically at the European Association for the Study of Science and Technology in Torun Poland in September 2014?

Helen Carr, Reader in Law,

Kent Law School: http://www.kent.ac.uk/law/people/academic/Carr,_Helen.html

Revaluing Care Workshop 2: September 2013, University of Adelaide, Australia.

At the beginning of September 2013 our Revaluing Care network had its second workshop, following an earlier workshop at Keele University, UK, in September 2012. This second meeting over two days at the University of Adelaide, in South Australia was marked by its attention to analytical concerns that had been raised in the 2012 session. It was also marked by much convivial discussion over food and wine at the end of each day.

We met in a room with views of the city all around us and, fortunately, the sun shone almost all of the time. What I recall most clearly was the very high standard of the papers, the sense of an extraordinary level of conversation within a group which has now forged a strong identity. The degree of confluence of ideas, of substantive and strongly supportive debate was striking. It is rare to attend such an event and feel constantly engaged by an extremely stimulating exchange of views. The event was both inclusive and demanding in the very best sense.

The workshop looked at a wide variety of existing services around care and their impacts on social interconnection (such as services around HIV/AIDs, young people and dementia care), as well as a range of existing legal and policy frameworks. This international orientation informed extensive discussion around new ways of conceiving care (for instance, in relation to social activism, migration and cross-national mobilities). However, it also enabled us to consider where the term care begins to fall away, or seems insufficiently recognised or activated. Consequently there was a significant interchange over the two days concerning the analytical and practical boundaries of care (for example, in relation to sexualities, diverse families, the notion of the human, marginalised services and public institutions seemingly distant from care including parliaments and courts).

These deliberations led to a range of theoretical and terminological discussions around the continuing usefulness of the notion of care, around what it covers and its limits.

The success of the workshop was not only evident in the strengthening of the network as an active, participatory and supportive research community, but also obvious in the final discussions around building research teams, projects and publications across the world and across disciplinary constraints. We aim as a result to produce articles, books of collected works, and grant applications. Many of these aims are now in process. The group was also firmly of the view that further workshops would be very worthwhile and assist in the development of these aims. So, watch this space.

In sum, I can only say that I, for one, gained immensely from the workshop and now have an even stronger sense of the considerable research capabilities of the group. This is a group with much to gain from our continuing association! It is one of the few research clusters that I have been involved in which shows ongoing promise of generating important intellectual exchanges and innovative new work .

Professor Chris Beasley

Discipline of Politics & International Studies (POLIS)
School of Politics and History
 
Co-Director, The Fay Gale Centre for Research on Gender

Older lesbians in residential and nursing care

A central feature of care in the fourth age is the medicalisation of ageing bodies, the emphasis on collective bodily care and the power dynamics involved in that care1. An aspect of these dynamics that has not yet been explored is the intersection of age, gender and sexuality in the provision of personal care in residential settings for older people. Single, childless, older women are most likely to populate these settings2. These women are also more likely to be lesbians, both because older lesbians and gay men are earlier and disproportionate users of formal social care, and because older lesbians are more likely than older heterosexual women to be single and childless3. Lesbians have often found the processes of self-disclosure in health contexts a treacherous terrain to navigate in earlier life, many avoiding screening/treatment and/or choosing not to disclose their sexual identities to medical professionals, particularly during intimate physical examinations4. Some younger(er) lesbians also report feeling vulnerable to the heteronormative gaze in those gay commercial contexts frequented by heterosexual women5.

Residential care for older people – heteronormative at best, homophobic at worst6, is situated at the intersection between these two sites of vulnerability. It is also a site of social exclusion where ageing bodies are hidden away and where dependency can mean it is less likely someone will complain about their care or otherwise assert their rights, especially people from minority communities7.

Care spaces in the home or in sheltered accommodation or residential care have long been recognised as complicating the notion of the public-private divide, being both public work spaces and private home spaces. For an older lesbian this becomes even more complicated. Home care which goes public no longer affords the sanctuary of private identity performance and management. Yet at the same time, because it is home care, often in care spaces where the very old older person is hidden away from the public eye, some of the legal protections which she might have been able to mobilise for herself also do not apply, when the disciplinary norms of social relationships dominate. In this way an older lesbian can be disadvantaged in multiple ways by a home that has gone public and a public space that operates on private, heteronormative, lines.

(1)  Twigg, Julia. (2004) ‘The body, gender, and age: Feminist insights in social gerontology.’ Journal of Aging Studies 1891): 59-73.

(2)  Arber, Sara (2006) ‘Gender and Later Life: Change, Choice and Constraints’. In J. Vincent, C. Phillipson and M. Downs (eds) The Futures of Old Age, pp. 54-61, London: Sage.

(3)  Heaphy, Brian Yip, Andrew and Thompson, Debbie (2004) ‘Ageing In A Non-Heterosexual Context’, Ageing & Society, 24(6): 881-902; Stonewall (2011) Lesbian, Gay Bisexual People in Later Life, London: Stonewall.

(4)  Hunt, Ruth, and Julie Fish. “Prescription for Change: Lesbian and bisexual women’s health check 2008.” Stonewall and De Montford University (2008).

(5)  Casey, Mark (2004) ‘ De-dyking Queer Space(s): Heterosexual Female Visibility in Gay and Lesbian Spaces’, Sexualities, 7(4): 446-461

(6)  Ward, Richard, Pugh, Stephen and Price, Elizabeth (2011) Don’t look back? Improving health and social care service delivery for older LGB users, London: Equality and Human Rights Commission.

(7)  Aronson, Jane and Neysmith, Sheila M. (2001) ‘Manufacturing Social Exclusion in the Home Care Market’, Canadian Public Policy – Analyse De Politiques, 27(2): 154-165

‘Defining and exploring “care practices”‘ by Kathryn Almack

With my colleague Andrew King (University of Surrey), I’m starting work on a paper which aims to explore informal care practices within the lives of older lesbian, gay and bisexual (LGB) people. This will problematize the framing of ‘informal care’ within policy that most often assumes that these forms of care take place either within assumed heteronormative familial relationships and/or within a dyadic relationship, with one person the ‘carer’ and one the ‘cared for’. We are drawing on ‘case stories’ which we’ve developed from our research with older LGB respondents, selected to represent wider issues within LGB communities and illustrative of a range of care practices, including care provided by friends and strangers, reciprocal care and other expressions of care within LGB communities. We anticipate our paper will also contribute to wider debates about the increasingly diverse range of family forms and social relationships that are not easy to name or recognize.

In developing this paper, we are also searching for our theoretical framework within which to situate this; the thoughts on this below are my own, although it will be something that I work on in collaboration and further feedback from members of the networks are welcome.

I’m leaning towards defining and exploring ‘care practices’ –  akin to Morgan’s (1999, 2011) concept of family practices – as a way to investigate and interrogate care and caring relationship and practices and in particular, unpack the meanings of such practices – emotional, relational, moral, and symbolic. The concept of family practices seeks to shifts the focus towards what families do rather than a focus on family structures; but nevertheless also recognising that at everyday levels the ‘family’ is still a term used by individuals to describe their most meaningful relationships. Morgan suggests that this perspective offers the possibility to see the family as ‘less of a noun and more of an adjective or, possibly, a verb’ (1999:16).

Care practices could encompass a whole range of practices that bind people together, that may include conflicts, tensions and ambivalence as well as affection and love. Thus addressing some of the complexities of care – interdependence, reciprocity, conflicts (workings of power/imbalance), resources, identities, moral deliberations, emotions, labour, working across time and space, involving networks as well as individuals and dyadic relationships.

There are of course other ways of theorising care, including carescapes and an ethics of care framework. Carescapes (Mckie et al 2002) seeks to add a dimension to thinking about care across time and space – the concept developed out of concerns focused on the changing yet gendered nature of caring for children and time-space relations implicit in combining caring and working and shifting roles as children grow (but that may have wider application to other relationships of care):

Mapping routes through the shifting and changing multi-dimensional terrain that comprises their vision of caring possibilities and obligations: routes that are influenced by everyday scheduling and by combining caring work through paid work and the paid work of carers (McKie et al 2002: 904)

And of course, an ethics of care framework has been developed and drawn upon to theorise values of care (key references include Tronto, 1993 and more recently Barnes, 2012) – involving both thought and action and placing value on notions of responsibilities of providing good care; valuing connectedness, incorporating values of dignity and respect. It seems to suggest and encompass a moral framework – though not prescriptive – about the delivery of care and how it is delivered. Is that distinct from or similar to the meanings ascribed to relationships through the doing of care?

I’m left with questions that I don’t yet have answers to. Are there overlaps between the three – care practices, carescapes and ethics of care? Is it that they have developed within different spheres and that they do say the same things in different ways or do they offer distinct contributions to debates on care?  All thoughts and ideas most welcome in taking these reflections forward.

 

Name, address, contact details.

Dr Kathryn Almack

Senior Research Fellow

B Floor, QMC

School of Health Sciences

University of Nottingham

Nottingham

NG7 2HA

 

Tel: +44 (0)115 8231204

Email: k.almack@nottingham.ac.uk

 

References:

Barnes, M. (2012) Care in Everyday Life: an ethic of care in practice. Bristol: Policy Press

McKie, L., Gregory, S. and Bowlby, S. (2002) Shadow Times: The temporal and spatial frameworks and experiences of caring and working. Sociology, 36,4:  897-924

Morgan, D. H. J. (1999) “Risk and family practices ” in Silva, Elisabeth B. and Smart, Carol (Eds.) The New Family? London: Sage Publications, pp. 13-30

Morgan, D. H.J. (2011) Rethinking Family Practices. London: Palgrave Macmillan

Tronto, J. (1993) Moral Boundaries: a political argument for an ethic of care. London: Routledge

Children and Families Bill 2013: Helping Parents to Reconcile Paid Work and Care?

The Children and Families Bill 2013 has just had its second reading in the House of Lords. One of the aims is to encourage fathers involvement in childcare and accordingly, fifty weeks of the twelve months maternity leave is to become available as parental leave to eligible parents (see the Bill 032 2013-14 as bought from the Commons, http://www.publications.parliament.uk/pa/bills/lbill/2013-2014/0032/14032.pdf, s89(1)). Increasing flexibility for parents may seem positive, but it is unlikely to result in a huge increase in fathers’ involvement in childcare. Indeed, it has been predicted that only 2% of eligible fathers will use any of the parental leave (http://www.publications.parliament.uk/pa/cm201213/cmpublic/childrenandfamilies/130307/pm/130307s01.htm, column 137).

With such small predicted uptake, it is questionable if the Bill could approach the reconciliation of work and care differently to better encourage fathers’ participation in childcare. The legislation currently considers care as something that needs to be accommodated in the workplace only occasionally, mainly during pregnancy and childbirth, and then fleetingly throughout the rest of childhood. However, these are obviously not the only times when people will need to combine paid work and their caring responsibilities. As has often been noted in the care literature, caring is an everyday and universal occurrence (see for example, M. Fineman The Autonomy Myth: A Theory of Dependency (The New Press, 2004)). Acknowledging this may allow and encourage fathers and others to become more involved in providing care. Therefore, an overarching change to the regulation of employment which would better accommodate caring responsibilities may have been more beneficial for fathers and all carers.

Recognising the universal nature of care may ensure that its importance is acknowledged. Generally, paid work is seen as the priority and any caring responsibilities are considered obstacles to this. Indeed, although much work has been done in regards to the reconciliation of paid work and caring responsibilities, most of it comes from an employment centric vantage. If the workplace is to better accommodate carers, the importance of care must be recognised. Caring can no longer be seen as an obstacle to employment, but as an everyday occurrence that will inevitably affect the workforce. Nicole Busby’s A Right to Care? Unpaid Care Work in European Employment Law (Oxford University Press, 2011) has been a vital contribution in this regard. She advocates a right to provide care alongside paid employment. Accordingly, rather than begrudgingly accommodating care when it cannot be avoided, it would be recognised as vitally important work which will regularly impact upon all people’s lives.

Better accommodating care and acknowledging its impact upon paid work may encourage more men, including fathers to increase their involvement in care. If caring is rightly acknowledged as an unavoidable part of normal life, the penalties associated with taking time out of employment will have to be removed. Accordingly, all people would feel more able to take leave from paid work. After all, leave will only be helpful if people feel that they can actually use it (S. Eaton ‘If You Can Use Them: Flexibility Policies, Organizational Commitment, and Perceived Performance’ (2003) 42 Industrial Relations 145). Therefore, a re-evaluation of paid work and the workforce is vital. If labour law is to better accommodate carers and challenge gender stereotypes regarding care, rather than introducing more sound-bite legislation, the acknowledgement of the importance and universality of care must fundamentally change the nature of paid work.