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‘Listening to care’ by Arooj Khan

It has taken me three months to finish reading Yasmin Gunaratnam’s most recent publication, Death and the Migrant -a collection of accounts of transnational dying and palliative care in English cities. It wasn’t overly long or complex, nor was I lacking in the time to devote to its reading. It took me three months to read a hundred and sixty one pages because every time I encountered a narrative from a care practitioner or a dying person, I also found myself reflecting on the time that I have not spent listening to those around me.

I can honestly say I cannot remember the last time I gave someone the justice of letting them speak without me interjecting. As Prue Chamberlayne has shown in her discussion of using biographical narrative methods with ‘Laura’, the manager of a homeless hostel, there are often long biographical trails behind those who work in the caring professions that can affect their capacity for ‘emotional thinking’ and listening to difficult stories.

Let me give you some background about myself – when I was six years old, teachers became increasingly frustrated with me not ‘doing as I was told’ and not learning at the same pace as other children in my class. It turned out that I had glue ear (a condition where your inner ear becomes filled with fluid), which stunted my listening and learning capabilities. Ever since then I have made a subconscious effort to make up for lost time.

I am the talker, the socialiser, the comedian, the anecdotal storyteller. It is because of these traits that I have fallen into a caring profession. I work with vulnerable people who are homeless and I try to provide them with support to maintain their independence and help them to develop and/or refine their life skills.

I cannot remember the last time that I was with a homeless person and just let them speak and tell me their stories. Any information that I tend to know about them is generally gleaned from case notes or instrumental questions that will help me to deal with their current problems.  I couldn’t really tell you what their life has been like and from their own personal perspective. I don’t know how they felt at the height of their troubles or what their most memorable life events are. I can’t say that in all my years of working in the charity world I have been privy to any poignant childhood memories that I have helped to elicit.

In the support work field, we are part of a paradigm of holistic care, which means that services make a point of taking the ‘whole person’ into account before making a diagnosis of what support and care can be offered. Having read Death and the Migrant, it seems to me that it is narratives and stories that are missing from my profession. If I listened wholeheartedly, unabashedly and sincerely, perhaps I could provide truly holistic support to those I want to help. This is more than suggesting the value of incorporating narrative skills and knowledge into the development of a package of care, it is also thinking about listening to stories as care. Might skills in eliciting and listening to the stories of others reconfigure the balance of complex emotional relationships between the listener/professional and storyteller in ways that validate the vulnerable ‘other’?

Excuse the cliché, but perhaps it is time for me to sit down and let someone else do the talking…

Arooj Khan is the Mentoring and Befriending Project Coordinator for Housing Justice. She is a Goldsmiths College postgraduate student with an interest in service delivery models for homeless individuals. She can be contacted via LinkedIn or at Housing Justice, 256 Bermondsey Street, London, SE1 3UJ

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

 

 

Scratching the ‘from scratch’ movement: considering ‘care’ through a description of ‘new domesticity’ in the United States

By Abigail Lance-De Vos

The recently published Homeward Bound: Why Women are Embracing the New Domesticity by Emily Matchar (2013) offers an extensive account of Americans whose lives have come to be organized around a ‘from scratch’ or ‘do it yourself’ philosophy. This entails filling days with the tasks of, literally and figuratively, farming, rather than farming out. Rather than working to convert a paycheck into consumption items, new domestics – whom Matchar identifies as a largely middle class set of women — expend their energies making food, clothes, crafts, and cleaning products, while tending home, garden, farm, and children. She also tells us that this group is opting out of getting children routinely vaccinated, and choosing to homeschool. Notably, the group also heavily participates in social media and web-based trade of their homemade crafts.

Matchar spends much of the book persuasively poking holes in some of the movement’s assumptions; she exposes how difficult it actually is to make a living through web-based craft commerce on sites like Etsy, and the biological determinism underlying the positions of some of the most revered ‘locavores’ (thanks, Michael Pollan). Matchar also articulates a more sweeping argument, in which she positions the new domestics as a manifestation of an America that no longer ‘works.’ She says, “New Domesticity is, at heart, a cry against a society that’s not working. A society that doesn’t offer safe-enough food, accessible health care, a reasonable level of environmental protections, any sort of rights for working parents…”

Matchar’s argument is in-step with George Packer’s recent book on America’s unwinding; for her, the “re-embrace of home and hearth” is a reactionary move to re-animate lives made unstable and dead-end. New domestics are not idealists with a calling, but struggling to regain a sense of purpose in an alienating and untrustworthy world.

This critique certainly offers a grim outlook on the political-economic landscape. Whether or not we feel persuaded, Matchar’s book also offers a nice lens to think about the topic of care. It seems that, in fact, care is precisely what is ‘at stake’ for the book’s subjects, as they feel it comes up lacking in a world that is either too heavy handed (eprescriptive vaccines) or not engaged enough (no child care). Care, then, is being re-calibrated by new domestics and so we can ask: what is there to learn about care through its deployments and contestations, in a time when things are ‘coming undone’?

One of the central features to emerge is how care articulates a different arrangement between the individual and the social good. On one hand, self-reliance surfaces as a trope in which subjects focus their energies on making and maintaining their own, individuated standards of responsibility; one of Matchar’s informants describes insurance as not something one buys into, but generates “taking care of ourselves, being healthy, eating organic food.” Home-schooling and vaccine opt-outs appear to be areas where people take particularly strong stands to question imposed notions of what is right for them to do. The ‘stranger,’ ‘the man,’ the ‘school,’ the ‘daycare center’ are referenced by Matchar’s characters as vivid foils for their self-determinations of what is right for them and their families.

Yet, this is not only a story of opting out. The capacity to forge common interests appears very much within the new domestic project. Take the craft-commerce arena and the blogosphere, two areas Matchar explores at length. In both of them, her narrators offer a well-developed sense of an audience for concern and commerce. The various projects to mediate, protect, and enhance life are brought together; food/family/garden/home/creativity/trade represent a continuous framework as new domestics constellate domains they present as having porous boundaries.

Here, claims to belong contain a desire to forge commonalities between people, history, practice, and value. Baking a cake, for example, ties one subject to her past as she imagines sharing a skill-set with her grandmother. This kind of fantasy may be read as a problematic return to dusty gender norms. Yet, it might also be a way to glean a kind of yearning for deep connection through common, everyday practices. But what is shared is not rule-following per se (i.e., we all go to the doctor to get our children vaccinated), but the work of following whatever rules come to be laid out in this new world.

The issue is, then, not to pit ‘take out’ meals versus ‘from scratch’ cooking, and whether we might find some apocalyptic traces of an irreversible divesting from the institutions that have already failed us. Rather, an examination of care through this book shows how embedded in new domestic self-determination is the desire for interconnection. Further, interconnection is not only a concept, but an active endeavor borne of everyday practice; to work on one’s own life can be the way to reach out to others. This paradox cannot be understood through our classical categories of sameness, conformity, and differentiation. Rather, questions should be asked about what it means to imagine and then enact this world in which what binds us is also a site offering the potential for radical departure, in which elevating the everyday is what brings about something hopeful and new.

‘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.

 

 

 

 

 

 

‘Applying Critical Psychology: Or starting a support and advocacy group for people with dementia who are lesbian, gay, bisexual or trans’ by Professor Elizabeth Peel

Critical psychologies share two common concerns. One is a critical perspective on the theory and methods of mainstream psychology: ‘[critical psychology] believes that psychology has adopted a paradigm of inquiry that is ill-suited to understanding human behaviour and experience’ (Sampson, 2000: 1). The field is concerned to undermine the positivist-empiricism of mainstream psychology, which has been (and continues to be) used to deter social change and to buttress the status quo; it is argued that traditional liberal norms of research ‘provide ideological support to dominant institutions and channel psychologists’ work and resources in system-maintaining rather than system-challenging directions’ (Fox, 2000: 22).  The other key concern is with progressive politics in some form; aligning with oppressed groups and urging psychology to work towards social justice. Or as Prilleltensky (1999: 100) puts it, critical psychology ‘is critical of society as much as it is critical of psychology’. According to Prilleltensky (1999) critical psychology is premised on the view that the current societal status quo oppresses various social groups and that conventional psychology is a tool in maintaining the status quo, because of this critical research should be a more practical endeavour. Critical psychologists are also united in opposition to conventional psychology, because of mainstream psychology’s ‘history of racism, sexism, heterosexism…[and] with its modernist pretensions to scientific expertise, is not a platform from which we wish to speak’ (Condor, 1997: 112). The consensus within critical psychology is a tentative one, but psychologists claiming criticality do, according to Condor (1997: 111), share common interests which include: ‘an attack on universalistic assumptions of human nature; a critique of individualism; an interest in social context and a broad commitment to contructionism; and a concern with text and talk’. Therefore, the gaze of critical psychology is directed both inwards, towards the discipline of psychology aiming to undermine and critique its research questions, theory, and methods, and also outwards, to society with the goal of  ‘be[ing] used at the service of the oppressed’ (Prilleltensky, 1999: 103).

So in the service of the oppressed I am in the process of setting up a support and/or advocacy group for lesbian, gay, bisexual and trans (LGBT) people with dementia, in partnership with the University of Worcester Association for Dementia Studies, Birmingham LGBT Centre for Health and Wellbeing and PACE Health London. We know that LGBT people with dementia are especially marginalised communities and that the issues impacting LGBT people with dementia are under represented (read: largely absent) in generic dementia groups and charities (Alzheimer’s Society, 2013). What haven’t been heard, to date, are the voices of LGBT people with dementia themselves. The nominally titled ‘Over the Rainbow’ project aims to offer:

1) an opportunity for LGBT people with dementia to come together in safe spaces;
2) facilitate intergenerational dialogue, support and advocacy;
3) allow the voices of LGBT people with dementia to be heard beyond the life-time of the project (via ongoing ‘dementia rainbow friends’ buddying, and online representation).

By working collaboratively with Birmingham LGBT Centre and PACE Health London my hope is that the ‘Over the Rainbow’ project will become embedded in the work of these third sector organizations and therefore sustainable over the longer-term.

The project is funded by DEEP (Dementia Engagement and Empowerment Project), in partnership with Innovations in Dementia, Joseph Rowntree Foundation, the Mental Health and Foundation and supported by Comic Relief.

With luck this project will create significant opportunities for LGBT people with dementia, and their carers, to self-advocate and raise the profile of this group of people with dementia both within generic dementia organizations and within LGBT communities. But first, there is the considerable challenge in reaching out to this hidden population. If you have any contacts or links, or would like to get involved do contact me on e.peel@worc.ac.uk Twitter: @ProfPeel

References

Condor, S. (1997) And So Say All of Us?:  Some thought on ‘experiential democratization’ as an aim for critical social psychologists. In T. Ibáñez & L. Íñiguez (Eds.) (1997) Critical Social Psychology. (pp. 111-146) London: Sage.

Fox, D. (2000). The Critical Psychology Project: Transforming society and transforming psychology. In T. Sloan (Ed.) Critical Psychology: Voices for change. (pp. 21-33). Basingstoke: Macmillan.

Prilleltensky, I. (1999) Critical Psychological Foundations for the Promotion of Mental Health. Annual Review of Critical Psychology: Foundations, 1, 100- 118.

Sampson, E. (2000) Of Rainbows and Differences. In T. Sloan (Ed.) Critical Psychology: Voices for change. (pp. 1-5). Basingstoke: Macmillan.

Biography
Elizabeth Peel is Professor of Psychology and Social Change in the Institute of Health and Society, University of Worcester, UK. Her research has explored diabetes self-management, same sex relationships and families, and diversity training. She holds a British Academy Mid-Career Fellowship for the Dementia Talking: Care, conversation and communication project. She won the BPS Psychology of Sexualities Section outstanding academic writing award 2012, and book awards from the American Psychological Association’s Division 44 for the co-edited volume Out in Psychology (Wiley, 2007) and in 2013 from the British Psychology Society for Lesbian, Gay, Bisexual, Trans and Queer Psychology: An introduction (Cambridge University Press, 2010).

 

‘Confessions of a Closeted Cared-for’ by Sorcha Uí Chonnachtaigh

I recently decided that it is time to come out of the cared-for closet – to borrow a problematic euphemism – for a number of reasons: to make life easier but also because I recognise the importance of using any privilege one has to dispel misconceptions and to normalise stigmatised illnesses. Cue the ripping of the bandaid: I live with Major Depression and Chronic Fatigue Syndrome (CFS)

The former has much stigma attached and the latter, being a condition, like many syndromes, with disputed causation, diagnosis and treatment, has even more. I’m one of the luckier ones, living with relatively mild levels of fatigue, sleep difficulties, muscular and joint pain, headaches and cognitive difficulties (concentration and memory, in particular). I can work if I place serious limits on my social and personal life. Until now, few people were aware of my condition and, to avoid looking like an uncaring friend, disinterested/unsupportive colleague etc, I often sacrificed personal projects entirely to engage in some social activities.

Sacrificing my personal life doesn’t make things easy for my partner. In order to meet the demands of a full time job, I sometimes have to work from home (read: bed) and limit “unnecessary” activities (read: washing, dressing, cooking, grocery shopping). Bouts of infections and busy times at work can result in an exacerbation of symptoms and there have been times when fatigue and pain were sufficiently disabling that my partner has had to bring food and water to me. I am fortunate to have a partner who has no problem doing an unfair share of housework while supporting and caring for me, physically and emotionally.

I am familiar with the academic literature on care; I believe that revaluing care is vital to the feminist project of (gender) equality (Baker et al 2004). I have found the critical conceptual work on ‘care’ and ‘dependence’ (Fine & Glendinning 2005) convincing on an intellectual level. Still, I struggle to accept care and the impact it has on my personal relationship. As you can probably imagine, doing the ‘dirty work’ (Twigg 2000) of caring, and being cared for on an intimate yet functionally-dependent level, makes for super sexy times!

Our partnership is materially affected by the caring role my partner takes on too – he often keeps his worries and problems to himself, protecting me from what he sees as “extra” anxiety and worry. This could be viewed as paternalism or legitimate self-interest in my well-being. However, the space to care about is particularly important when the ability to care for is limited.

The literature challenges the presumption that relationships of care are unequal but there is, personally speaking, an experiential distinction between a relationship of care and relationships of love, sex and friendship. Perhaps it is a matter of renegotiation, but I have a persistent sense of discomfort about the division of labour, the limitations my care needs place on my partner, and the capacity to be considered the locus of desire as well as the object of care work.

Sorcha Uí Chonnachtaigh, School of Law, Keele University, s.ui.chonnachtaigh@keele.ac.uk

References

Baker, J, Lynch, K, Cantillon, S & J Walsh (2004) Equality: From Theory to Action. Palgrave Macmillan, 220-228.

Fine, M & Glendinning, C (2005) Dependence, independence or inter-dependence? Revisiting the concepts of ‘care’ and ‘dependency’. Ageing and Society 25:601-621.

Nussbaum, M (1995) Human Capabilities, Female Human Beings. In MC Nussbaum & J Glover (eds.) Women, Culture, and Development: A Study of Human Capabilities. WIDER Studies in Development Economics. Oxford: Clarendon Press; New York: Oxford University Press, 61-104.

Twigg, Julia (2000) Carework as a form of bodywork. Ageing and Society 20(4): 389-411.

‘Using research to identify and address loneliness in older age’ by Anna Goodman, Policy and Research Officer, ‘Campaign to End Loneliness’

There is an ever-growing body of research and evidence around the issue of loneliness – that unwelcome feeling that occurs when there is a mismatch between the number and quality of relationships we want and those we have – in older age. There is a strong indication that loneliness and social isolation has a negative impact on our mental and physical health. Research also shows that social relationships are crucial to a good quality of life in older age.

We are learning more all the time but so far we have only scratched the surface, there is so much more that we –  as campaigners, researchers and practitioners – need to learn: from who is at risk, to what the best interventions are. The Campaign to End Loneliness and our network of academics and researchers are working to increase, develop and better share the research base around loneliness in older age.

As part of this project, we recently held a small workshop with Professor Christina Victor of Brunel University, who is examining data from the English Longitudinal Study of Ageing to answer a number of questions including: ‘who is lonely?’, ‘when are they lonely?’, ‘what implications does this have for practice?’. Her early findings indicate that:

  • Loneliness can be a self-fulfilling prophecy – if you expect to be lonely in later life, you are more likely to be lonely.
  • 40% of widows are lonely (but some actually become less lonely when they are widowed).
  • Loneliness is a fluid experience – someone who might feel lonely one month, won’t necessarily feel the same three months later.
  • Older men are just as lonely as older women.
  • Older people from BME communities are particularly vulnerable to loneliness

You can watch Professor Victor’s presentation in full here.

Implications for research and practice

Although a work in progress, this new research presents a number of challenges to organisations and charities providing support for older people. For example, we need to find ways to make our services more responsive to the highly individual and fluctuating nature of loneliness. This is no easy task, but during discussions workshop attendees talked about how building partnerships with GPs, registrars, community police teams, and carers groups (amongst others) could help them to achieve this. Notes from these discussions can be read here.

As if often the case, the more we learn about whom is lonely and when, the more questions we uncover for further research. More specifically, we need the academic community to help us demonstrate what the characteristics of different successful loneliness interventions are – and keep us informed of any further implications their research might have for practitioners.

We aim share the latest evidence around loneliness and isolation in a quarterly Research Bulletin, so please do get in touch if you have something you would like us to send to our 1,350+ supporter network.

For more information about the Campaign to End Loneliness, our Research Hub or the Research Bulletin, please contact Anna Goodman at anna@campaigntoendloneliness.org.uk.

‘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 

‘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