Paid Housework? Wages for, Wages Against.

Lawyer and ex parliamentarian Giulia Bongiorno is proposing the introduction of a salary for women who do housework as a way of “changing the direction” of the domestic violence debate in Italy. The original impetus behind the initiative is the acknowledgement that for many women lack of economic independence remains an important factor affecting their decision to leave an abusive relationship. “Obviously”, the proposal adds, “the salary cannot be guaranteed to women only as victims of domestic violence… The issue is another one: it is necessary to rethink the housewife’s role tout court: it is necessary to gratify and not humiliate the woman who chooses to be one”.[1] Hence the proposal for a salary to be provided either by the state or, in the case of very affluent households, by the well-off partner. Beyond domestic violence, Bongiorno’s hope is that the economic and social recognition bestowed on housework will in time enable it to be become “gender-free”.

There is much to be said about the link made here between domestic violence and women’s “invisible” labour but I’d like to briefly reflect on another aspect of the proposal, that is the fact that while referring to the normative, jurisprudential and administrative recognition that housework has received in Italy in the past three decades, the proposal is silent about an apparently similar initiative. This is the Wages for Housework campaign of the 1970s, which Italian feminists promoted for over a decade and was in turn linked to similar campaigns in Britain and the United States. I said apparently because these are very different initiatives in terms of both the premise on which they are based and the arguments they make. The common point is the recognition of domestic labour as work but this is where the similarity ends.

For the Wages for Housework campaigners, this work was certainly not a woman’s “choice”: it corresponded to a particular division of labour under capitalism which separated the sphere of production from that of reproduction, assigning (capitalist) value to the former while considering the latter unproductive. Hence, the point was to make domestic labour visible and show how crucial it was to capitalist accumulation rather than celebrating it as a woman’s choice. As Federici (1975) put it

“To say that we want wages for housework is to expose the fact that housework is already money for capital, that capital has made and makes money out of our cooking, smiling, fucking. At the same time, it shows that we have cooked, smiled, fucked throughout the years not because it was easier for us than for anybody else, but because we did not have any other choice”.

The title of her essay, Wages Against Housework, conveyed the struggle that recognising this labour as work comported, that is the need to valorise it while subverting the processes that made it “work”, thus starting to address the separation between production and reproduction. Examples of such provocations included, in addition to the demand of wages for housework, the demand that social services be organised at community level while paid by the state so to retain control and autonomy over their nature and quality (Dalla Costa and James, 1972). One such demand in England took the form of community-run nurseries, the same communities which are currently been dismantled under austerity (Barbagallo and Beuret, 2012).

Thirty years later both Dalla Costa and Federici have reflected on the limits of the wage struggle as conducive to “women’s liberation”, while also dispelling the myth that “due to increased women’s employment, unpaid domestic work and gender based hierarchies have vanished”, pointing instead to the need for self-valorization initiatives outside the logic of the market and capital (Federici and Barbagallo, 2012). This is not to say that domestic and care labour should no longer be considered work. Indeed, as Selma James has recently pointed out ‘The refusal of feminists toˇacknowledge that work enabled Tony Blair to call mothers “workless” and made way for welfare reform’s definition of aˇgoodˇmother: she goes out to a job, even below the minimum wage, with whatever childcare she can afford’ (The Guardian, 7 March 2014). The point is rather to show how problematic it is to argue for wages for housework without a political perspective that sees it as part of a system of capital accumulation which is based on the separation between the productive and reproductive spheres.

At a very basic level, providing wages without confronting the isolation, repetition and relentlessness this labour comports (and therefore without affecting the underlying social relations) is likely to reinforce the view of housework as women’s work. And the suggestion in the proposal that the wealthy spouse pays for the housework carried out by the less well-off certainly points in this direction, not in that of housework becoming “gender free”. But at a time when austerity is squeezing the costs of social reproduction to the bare minimum, it is even more important we look at the ways in which the social reproductive field is being re-configured, particularly at the new division of reproductive labour worldwide and its relationship to the productive sphere. To argue that domestic and care labour is work means to acknowledge and trace the multifarious ways in which it contributes to making (capitalist) value. Arguing for the remuneration of such labour without challenging the basis on which it contributes to capitalist processes of valorisation is a very different kind of politics from that envisaged and practiced by Wages for Housework activists.

1 http://www.doppiadifesa.it/wp-content/uploads/2010/02/Proposta-_Stipendio-antiviolenza_.pdf

Why dignity can’t be ‘delivered’.

By Liz Lloyd

For many years, dignity in care has been a core policy aim as well as the focus of commissions and working parties. In 2012 the UK’s Commission on Dignity in Care for Older People pointed out the breadth and depth of cultural change that would be required to secure dignified care for older people and argued that deep-seated age discrimination and stereotyping of older people were major barriers. The Commission took the view that to shift stereotypical views of old age it is necessary to show that not all older people are frail and dependent and, moreover, that older people evidently make a positive contribution to society through unpaid work and community activities. These are important points but do not add up to an adequate basis for shifting attitudes towards those who are frail and dependent. True, a cross-section of people aged over 70 will show varying levels of health and capacity for self-care but it is also true that everybody aged over 70 will at some point need care. Indeed, the same applies to all age groups although the need for care is increasingly postponed until old age. Thus, we need a different way of conceptualising dignity so that we do not always associate it with self-reliance but acknowledge its relevance in the context of dependency on others, because dependency is part of what it is to be human.

Dignity is a personal concept, involving individual identity and self-respect. The potential for a loss of personal dignity increases with age, as health declines and people live with and eventually die with or from a range of conditions. Falls, continence problems and loss of mobility, for example, affect individual self-respect in profound ways. But dignity is also a social concept, involving social and cultural practices, institutional systems and interpersonal behaviour. Personal and social meanings of dignity are strongly entwined. Importantly, in both personal and social meanings, dignity is relevant to those who provide care as well as those who receive it. The dignity of the care worker is enhanced when their job is done well and diminished when it is not, such as when a worker has insufficient time to attend to anything other than the older person’s basic functional needs. The economic and political contexts that prioritise constraints on public spending make it harder to overcome barriers to dignity in care for both the care worker and the older person.

To overcome the loss of dignity associated with declining health, older people typically make strenuous efforts to avoid becoming a burden on others.  But, at the same time, they need to adjust to their changing circumstances and learn to accept help. Striking the right balance between these twin obligations is a complex and deeply personal matter. People’s perceptions of how they wish to be supported are influenced by family ties, social and cultural background, migration experience and individual life histories. What might appear insignificant to a care provider might be deeply significant to the older person.

We should not underestimate the importance to personal dignity of the style of communication between front-line staff and older people. However, the complex issues faced by older people when health declines requires those in health and care services not simply to check their actions against a list of standards but to engage with the complexities of individual people’s lives. Understanding the impact of loss and change and helping people make the difficult decisions that follow can be an important basis for care that maintains dignity. Above all, this needs to be done not because we should behave well towards them but because frailty and dependency are part of us all.

Liz Lloyd

10th March 2014

 

 

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.

 

‘How can care be spiritual?’ by Dr Janice Clarke, Institute of Health and Society, University of Worcester.

It’s been noted that Revaluing Care bloggers haven’t had a lot to say about spiritual care  September 21, 2013 by Sue Westwood  so I thought I’d better step up to the plate. Nursing has tapped into the notion of spirituality because of the drive to be holistic; if nurses are supposed to look after the whole person, how could we overlook this essential bit.  Spirituality and spiritual care has been absorbed into the matrix of needs, problems and assessment which is how much of nursing is described.  Spiritual care is most often seen as the way to fill a perceived need in patients which is preventing them from achieving spiritual wellbeing and the ways most encouraged are by talking, or through putting in place something else, which could be anything from pain relief to a chaplain.

But if you ask most nurses what they think spiritual care is you’ll get some replies that don’t have anything to do with problem solving.  McSherry and Jamieson (2011) did this  and found that over 80% of more than 4000 nurses thought that they could provide spiritual care by showing concern, kindness and cheerfulness (this came second only to referral to a chaplain) but only 5.3% felt always able to meet their patients spiritual needs. So  why do they spend so much time not being cheerful, concerned and kind?  Of course the mismatch is because  although nurses interpret spiritual care as being about how they behave with patients, and how they ‘care’, they are taught, that spiritual care is about spiritual assessment and talking about spirituality and they don’t feel able and confident to engage do either (McSherry and Jamieson 2011). Similarly patients are more likely to say that they think spiritual care is about how a nurse is with them rather than how ably she is to ‘plan’ their spiritual care (Taylor and Mamier 2005).

This is where spiritual care and ‘care’ for me, converge.  Interestingly the literature about ‘care’ and the literature about ‘spiritual care’ don’t actually intersect which is another phenomenon to do with spiritual care which baffled me when I started on this trail. This was the area I set out to research for my doctorate and it grew into a whole book about how to do actual day to day ordinary care in a spiritual way (Clarke 2013). ‘Spiritual’ in this sense is about relating with compassion. The way spirituality is described in relation to health, is in terms of spiritual wellbeing which is about wholeness, fulfilment, identity, meaning, confirmation and feeling valued and loved. It seems to me that nurses can behave in a way that helps patients to feel this kind of spiritual wellbeing in all the ordinary things they do – or they can do the opposite.

This is why I’ve focused on how   professionals relate to patients and especially in how they provide physical personal care such as in bathing, moving and eating (Clarke 2013, see below).  If nurses can’t express spiritual care in how they relate in every ordinary encounter and task, how can we claim that spirituality is really at the heart of nursing?

Practicing spiritual care at mealtimes – from Spiritual Care in Everyday Nursing Practice: A New Approach (Clarke 2013, p.185)

Action  

  • Prior to the mealtime patients should be invited to choose the food they will eat.
  • Familiarise yourself with the assessments of the patients in your care
  • Invite people who might need assistance   to work out a plan for the help they need so that everyone knows what will happen when the food arrives.
  • There should be choices available which are compatible with the patients’ personal, cultural and religious needs.

Spiritual rationale

  • Empowers the patient and shows respect  for their personhood.
  • Shows competence and professionalism which expresses care and valuing of patients.
  • Empowering and shows you value their contribution.
  • Relieves the anxiety in patients of worrying if food will be okay and whether they will be able to eat it. So that patients can feel more relaxed and focus their energy on getting well.
  • Shows you are sensitive to their individuality and religious and cultural preferences, so recognising patients as full members of the community.

Action

  • Make patients comfortable and ready for eating. Give the chance to wash hands and face ready for eating.
  • Give the option of sitting away from their bed and with other people if possible.
  • Tidy the area around each patient removing urine bottles and wiping surfaces. Shows sensitivity to and respect for patient’s feelings.
  • Shows competence and attention to detail and so inspires trust
  • Shows how you value the eating experience.
  • Check the food is   appropriate, attractive, the right temperature and prepared so that each person can manage it.
  • Ensure it is what the patients ordered. Expresses care for the patient and shows that they are valuable enough for you to care if they are not enjoying the food.
  • Give help to each person individually without interruption.
  • Ensure the patient is not disturbed while they eat. Monitor what food is eaten and how patients  are managing where appropriate.

Spiritual Rationale

  • Expresses care for  patients’ needs and concern for their recovery.
  • Be prepared to be an advocate for patients to make complaints and make changes  if the food is unacceptable or the amount of help available  is not enough.

Action

  • Be imaginative and creative in finding better ways to manage mealtimes.

Spiritual rationale

  • Shows the patient that they matter and are valued.

References
Clarke, J. (2006) A discussion paper about ‘meaning’ in the nursing literature on spirituality: An interpretation of meaning as ‘ultimate concern’ using the work of Paul Tillich. International Journal of Nursing Studies, 43, 915-921.
Clarke, J. (2013) Spiritual Care in Everyday Nursing Practice: A New Approach. Basingstoke, Palgrave
McSherry, W., Jamieson, S. (2011) An online survey of nurses’ perceptions of spirituality and spiritual care. Journal of Clinical Nursing, 20(11/12), 1757-1767.
Taylor, E.J, Mamier, I. (2005) ‘Spiritual care nursing: what cancer patients and family caregivers want’, Journal of Advanced Nursing, 49(3), 260–267.
Swinton, J., Pattison, S. (2010) Moving beyond clarity: towards a thin, vague, and useful understanding of spiritualty in nursing care. Nursing Philosophy, 11, 226-237.

 

 

 

 

 

 

Workplace personal assistants – what do we need to know?

While I finished my PhD, I worked as a personal assistant (PA) for a physically disabled woman. At first I worked evenings in her home, but later I switched roles and accompanied her to work.

I was surprised to find how different the role was. At home my job had been roughly how you might imagine a more traditional ‘care assistant’ job – largely making food and household chores. But as a ‘workplace PA’ I was taking notes in meetings, filing, and working on complex spreadsheets and reports.

I was always with my employer, of course, and she gave step by step instructions if needed, but the days went more smoothly because I knew how to use a spreadsheet, and could judge what parts of meetings were important enough to write down.

It was an interesting experience, and one I’ve continued to reflect on since.

I was at work, but within my employer’s workplace. My contract and confidentiality agreement were with her, not her employer. If I was late, that made her late through no fault of her own. My behaviour and appearance reflected on her, and if I had been untidy or rude to her colleagues she would have felt responsible.

My employer’s colleagues were used to having her PAs around, but other people seemed unsure about how to react to me. Some would acknowledge my presence, offering me tea (always welcome), asking my name to write in minutes (unnecessary), and trying to include me in discussions in meetings (inappropriate). Others would focus on my employer (good) and act as if I wasn’t there at all (not so good).

I haven’t seen much written about the professional role of workplace PAs who support a physically disabled person. Having spent several years as a workplace PA myself, it seemed to me that my role was very different to someone supporting a learning disabled person or someone with mental health issues at work.

It is likely that more PAs will be needed as people take increasing control over their own support arrangements through both social care and workplace schemes. We need to know more about the current and potential roles of the workplace PA. That’s the only way we can provide appropriate support to workplace PAs themselves, the disabled people who employ them, and to their employers.

What do we already know?

What do we already know about workplace PAs? Not much. The Department of Health’s Social care workforce research initiative (Qureshi and McNay, 2011) acknowledged the current lack of information about PAs more generally, and identified a need to collect routine information such as numbers and levels of pay.

Similarly, the Framework for supporting personal assistants working in adult social care (DH, 2011) recognised the need for a better understanding of personal assistant working, including the range of tasks carried out by PAs, particularly given that they are likely to be working in isolation with little opportunity for reflection and professional development.

There is some mention in such work of supporting people to take an active part in their communities, including access to education and employment. But there is very little, if anything, written specifically about PAs supporting people at work.

Employment rates of disabled people are relatively low. In 2012, only 46.3% of working age disabled people were in employment, compared to 76.4% of working age non-disabled people (Office for Disability Issues). In 2010, young disabled people were twice as likely to be not in employment, education or training as non-disabled people of a similar age (Equality and Human Rights Commission, 2010).

If we are to meet disabled people’s employment aspirations, there must be appropriate support. For some this will include workplace PAs.

The Access to Work scheme is the primary mechanism for supporting disabled people in work at present. A recent review (Department for Work and Pensions, 2011) described this as ‘the government’s best kept secret’, and suggested demand had been kept low by lack of advertising. In April-December 2012, Access to Work granted 11,580 awards (out of a total of 33,180) to pay for support workers, but does not indicate how many of these were to physically disabled people.

Specific questions that need answers

If we are to improve support for workplace PAs, the people who employ them and their employers, then we need some specific information. I suggest some initial questions should include the following.

  • Numbers: How many physically disabled people in employment use a PA at work? How many workplace PAs are there?
  • Roles: What roles do workplace PAs have? If they also work as a home-based PA, what are the differences between the roles?
  • Payment: How much are workplace PAs paid, and where does the money to pay them come from?
  • Recruitment: How are workplace PAs recruited?
  • Career development: What is the employment background of workplace PAs (and do they consider themselves to be part of the ‘social care workforce’)? Do they consider being a workplace PA as a career, or a temporary job?
  • Issues and relationships: What issues have disabled people using PAs experienced at work (with PAs, colleagues, or employers)? How do workplace PAs find relationships with the disabled person, their colleagues, and others in the workplace? How do employers feel about having PAs in their workplace?

For disabled people, particularly those applying for their first jobs, knowing about the role of a workplace PA may encourage them to aspire to a job they may not have otherwise considered. For the organisations who support them, an understanding of the specific requirements of the job will help with recruitment and retention of suitable PAs.

It’s tempting to group workplace PAs with the rest of the social care workforce. But by doing so we risk planning for the recruitment of the same people through the same channels as we have always done. Workplace PAs aren’t necessarily paid with social care money, and while their work may include some personal care, it’s likely to include other specialist skills too. If we think only in terms of social care workers, we risk losing the expertise of people who may be perfect for the job, but who haven’t considered a social care career.

This is my initial attempt to get some of my musings about this written down. I’ll be developing my thoughts further over the next few months, not least about whether ‘workplace PA’ is the appropriate term. I’m interested in anything anyone has to say, either about their own experiences, or just thoughts on reading this. Please get in touch.

Jenni Brooks (jenni.brooks@york.ac.uk), Social Policy Research Unit, University of York

Twitter: @JenniBrooks

References

Department for Work and Pensions (2011) Getting in, staying in and getting on. Disability employment support fit for the future Accessed 1st Feb 2014

Department of Health (2011) Working for personalised care: a framework for supporting personal assistants working in adult social care Accessed 1st Feb 2014

Equality and Human Rights Commission (2010) How fair is Britain? The first triennial review Accessed 1st Feb 2014

Office for Disability Issues Disability facts and figures Accessed 1st Feb 2014

Qureshi, H. and McNay, M. (2011) Overview and synthesis: DH social care workforce research initiative 2007-2011 Accessed 1st Feb 2014

‘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 

ReValuing Care in 2013

A wordle of the ReValuing Care Blog 2013

ReValuing Care in 2013

As we approach the end of 2013, the time is ripe for a brief look back over the activities of the ReValuing Care research network in the last 12 months, and a peek forwards into ReValuing Care activities for 2014.

I’ll begin with a heart-felt “thank you”. To all of you – who have written for the blog, read contributions to this blog, shared those contributions on twitter, facebook and other social media. Since the launch of our regular blog series in June of this year, there have been nearly 50 blog contributions from members of the network. The website visitor numbers have increased from just 120 in January, to over 2,000 unique visitors in November. The ‘wordle’ image on this page provides an overview of the topics that have been covered. Of course, we’ve been talking about ‘care’; but we’ve also seen posts on topics as diverse as dementia, gender identity, soup kitchens, parenting, childlessness, sexuality and ageing (to name but a few). Care has been explored in its personal, practical, and conceptual senses. Blog contributors have explored the challenges and possibilities of care, and the multifaceted ways that research into and about care can lead to the (re)valuing of all forms of care. The international nature of our network has been demonstrated by the diverse locations of care research that have been shared: we’ve had contributions from the UK, the Republic of Ireland, India, Kenya, the US, Italy, and Australia. Creating a network is a very difficult thing to do. It takes time, energy, thought. It takes care. We all have to care about the potential and possibilities that arise from being in touch with others who care about care.

The way this blog has developed over the last six months, demonstrates the vitality and diversity of research about care. The challenge we face for the future is how to keep our conversations going; how to make the most of the network that we have created. Our AHRC grant, which funds the current phase of the ReValuing Care research network ends in the next few months. It would be all too easy for our network to spit, and fade and fizzle out when the money runs out. For the network to continue to develop, and for the conversations to continue beyond that time, we need to think creatively about how to take things forward. I have some ideas, and I’m sure you all do too.

To keep this network going, to build on the work that we’ve done, we need to nurture it, feed it and let it grow. We need to take care of it.

How? We could hold another ReValuing Care workshop (does anyone want to host?). We could reach out more to sectors beyond academia through other types of events (do you have ideas?). We could consolidate our academic contributions so far through an edited collection. We could apply for further funding to take forward additional questions and ideas. We could encourage our colleagues and contacts to get involved (from PhD students to professors, policy makers to activists, it doesn’t matter who you are, so long as you are interested in care). Perhaps the easiest thing of all to do is to keep up this blog. When we see a news story about care that makes us feel (in many ways it doesn’t matter which emotion sparks us off: angry, confused, impressed, concerned, happy…) we should write about it.  There are so many things we can do. I hope that we do at least some of them.

I’ll end with the caring equivalent of a call to arms (maybe a call to alms?): 2013 has seen the ReValuing Care research network develop into a community of scholars from across the globe. I very much hope that 2014 has even more in store for us. For this to happen, we need you to join in. I hope you will.

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