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

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

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

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

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

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

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

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

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

 

Name, address, contact details.

Dr Kathryn Almack

Senior Research Fellow

B Floor, QMC

School of Health Sciences

University of Nottingham

Nottingham

NG7 2HA

 

Tel: +44 (0)115 8231204

Email: k.almack@nottingham.ac.uk

 

References:

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

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

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

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

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

Care in the first two years of life: OXPIP and the emerging discipline of parent-infant psychotherapy

By Adrian Sell, Executive Director, OXPIP: The Oxford Parent Infant Project

OXPIP is one of the organisations pioneering parent-infant psychotherapy. Founded in 1998 we have been working in Oxfordshire to provide support to parents who are struggling to form a secure attachment to their baby. In the last three years we have worked with over 900 families and consistently improved mental health and the quality of the parent-infant relationship[1]. We work with babies up to the age of two and their parents, normally the mother but we have worked with many fathers as well.

Parent-infant psychotherapy is distinguished by the attention it brings to the mother’s mental health, the baby’s mental health and, crucially, to the quality of the relationship between parent and baby. This focus on the quality of the care that comes from this early experience is critical to our success in addressing intergenerational cycles of disadvantage. We all have a tendency to default to parenting our children as we were parented, even if those relationships were withdrawn, unpredictable or harmful.

Our clinicians are skilled at enabling parents to build and sustain closer relationships with their children. One of the therapeutic tools for achieving this is through modelling thoughtful, empathic ways of relating within the therapeutic relationship. For some of the parents we work with this is the first time they have really experienced being thought about and related to in this way; it can be a powerful tool for change, opening up new possibilities for how they in turn can relate to their babies.

Our team of psychotherapists come from a range of backgrounds including Child Psychotherapy, Adult Psychotherapy and Clinical Psychology as well as including prior qualifications in Health Visiting, Nursing, Midwifery, Social Work and Teaching. All have undergone Infant Observation training, and are trained in the use of video through the (NICE approved) Video Interaction Guidance approach. This mix of backgrounds and approaches gives our work a strength and rigour that forces us to constantly challenge our own preconceptions and viewpoints.

We are part of a growing national movement of people and organisations who are bringing greater focus to the first years of life. Our Executive Director, Adrian Sell is a trustee of PIP-UK a new national charity seeking to support similar services to develop elsewhere. We have backing from Impetus – The Private Equity Foundation where we are one of twenty-five organisations they see as critical social game-changers supporting disadvantaged children to develop to their full potential. We are a member of the Centre for Social Justice Alliance where we are recognised for our effectiveness in tackling the root causes of poverty and disadvantage. We are supporters of the All Party Parliamentary Group for Conception to Age 2 – the first 1001 days

We all instinctively know that the first few years of our life are formative. There is also considerable neuroscientific evidence that has emerged to support this. OXPIP are now at the forefront of developing an evidence base for the positive impact that parent-infant psychotherapy can have. If you want to find out more then please look at our website, get in touch or leave a comment below.

OXPIP: The Oxford Parent Infant Project
Suite J
The Kidlington Centre
Kidlington
OX5 2DL
T: 01865 371080 or 01865 778034
info@oxpip.org.uk
www.oxpip.org.uk

 

Wanting to Participate? Findings from a Study in New York’s HIV Clinics

ReValuing Care contributor Bob Hudson recently wrote about the potential of neighborhood support groups to foster community caregiving. I would like to build upon this by offering a description of findings from an ethnographic project by the New York State Department of Health AIDS Institute conducted between 2010-2011.  In this study, 45 patients and many of their providers from three HIV-specialty healthcare centers were  asked about what “quality care” meant for them.  Patients were interviewed multiple times over a 12 month period, and they were also accompanied through primary care visits to understand how service delivery processes shaped their views.

Findings from the study built on the notion of participation in unexpected ways and included the following key ideas:

1)    Patients used familiar language to talk about “quality,” but adapted such vocabulary in unique, creative, and personal ways based on their healthcare experiences.

2)    They expressed understanding the ‘behind the scenes’ factors affecting healthcare, such as cost and staffing issues.  Patients also framed quality care as activities that they were able to carry out on behalf of the healthcare organization and the work of its staff alongside these factors.

3)    Participation was not only described, but also enacted at the clinic’s service delivery level.  Patients participated in the daily running of the clinic in a variety of ways. A few common forms included taking on administrative responsibilities, providing emotional support, and offering feedback.  Participation was positive and negative, active and passive, solicited and unsolicited. All types impacted delivery goals.

Our research shows that some healthcare consumers have strong ideas about what they want in their care, and they are willing to ‘co-produce’ services to improve the likelihood of successful and satisfying healthcare.  In so doing, they go beyond weighing in through satisfaction surveys to offer hands-on involvement.  Healthcare designers who recognize and harness such tendencies may lower costs, improve management efficiencies, foster positive relationships, and influence health outcomes.  Insights are useful in chronic health management contexts, but there are applications for short term care as well as in other public sector arenas.  The challenge is to build such systems in equitable, inclusive, and respectful ways that does not dictate participation, but offers conditions for it to flourish.

If you would like more information about the study, please contact me at abigail.baimlance@gmail.com.

 

‘The interface between care politics and corruption’ by Renu Addlakha

A most shocking event has taken place in the Indian state of Bihar involving the state run midday school meal programme resulting in the death of 23 children who had consumed insecticide laced rice and curry (http://news.in.msn.com/national/government-to-probe-mid-day-meal-scheme-after-23-children-die), The Midday Meal Scheme is the world’s largest school feeding programme involving 120 million children in India. The programme is run on a public-private partnership with NGOs and local contractors and the scheme involves giving hot nutritious freshly cooked food to children. It is envisaged as a means of reducing malnutrition and increasing school retention of children coming from poor households, particularly in rural areas.

In the present case the food had been cooked on the school premises and preliminary investigations suggest unintentional poisoning. The oil in which the food was cooked had been put in an empty pesticide container and the two substances had got mixed. This oil had then been used for cooking the meal. The food was prepared in the house of one of the teachers whose husband was grocer. So conspiracy theories are also rife.

From a care perspective, this case raises several issue to my mind.Firstly, how can such carelessness take place and what does it tell us about the attitude of those managing the programme? What does this tell us about the contemporary state as it moves from a paradigm of social welfare to neo-liberalism wherein it sub-contracts core care functions to private stakeholders? What is the value being placed on the lives of young children in such a context? How is that the rage which such an event should have generated has turned more into a storm in a teacup? What does this event tell us about the interface between care politics and corruption?

I would love hear how others view this event from a care perspective.

Renu Addlakha
Professor
Centre for Women’s Development Studies
New Delhi, India.

New Publication on Dementia Carers’ experiences of ‘the system’

maze

Carers of people living with dementia find ‘the system’ of dementia support to be a maze.

A new research article by Elizabeth Peel and Rosie Harding has been published ‘online first’ in Dementia: The International Journal of Social Research and Practice. ‘“It’s a huge maze, the system, it’s a terrible maze”: Dementia carers’ constructions of navigating health and social care services’ explores data from both the ‘Duties to Care’ and ‘Dementia Talking’ dementia projects to highlight the experiences of familial carers of people living with dementia in navigating the complex health and social care systems that provide support for people living with dementia.

Abstract: Dementia is a challenging, progressive set of conditions which present a large care burden to informal, familial carers. A complex array of health and social care services are needed to support people living with dementia. Drawing on the interlinked ‘Duties to Care’ and ‘Dementia Talking’ projects, in this article we focus on British carers’ talk about health and social care services. We explore data from a mixed-method questionnaire (n = 185), four focus groups and eleven interviews with informal carers of people living with dementia using thematic discourse analysis. Three themes are discussed: (1) services as a ‘maze’; (2) services as overly limited – ‘beyond our remit’; and (3) the battle and fighting discourse deployed by these carers. Our analysis highlights that carers find navigating systemic issues in dementia care time-consuming, unpredictable and often more difficult than the caring work they undertake.

For more information, please contact either Professor Elizabeth Peel (e.peel@worc.ac.uk) or Dr Rosie Harding (r.j.harding@bham.ac.uk). The article can be accessed on the Dementia journal website or by contacting us.

House of Lords Select Committee on the Mental Capacity Act 2005

The House of Lords has established a Select Committee on the Mental Capacity Act 2005 (MCA). The terms of reference for the committee are to “consider and report on the Mental Capacity Act 2005”.The Committee has been taking oral evidence,  and has also published a call for written evidence submissions. For more details on the committee, and the questions that are being asked in the call, see the Parliament website. The deadline for responses is 2 September 2013, during our next ReValuing Care workshop ‘Caring about Social Interconnection‘ in Adelaide. As such, we will aim to have a final version of our response completed before the end of August.

As an interdisciplinary and multi-sector network of academics, activists, carers and third sector professionals with interests in care, the ReValuing Care Network is well placed to put together a response to this call for evidence. I will coordinate a response to the questions asked by the committee, and have set up a few discussions on the private network members forum to facilitate this. All network members are warmly invited to contribute to the response, and any other interested parties are warmly invited to join the network. To join us, simply fill in the form.

The Call for Evidence covers all aspects of the operation of the MCA, including the overall context, implementation, decision-making, Deprivation of Liberty Safeguards (DoLS), the Court of Protection and the Office of the Public Guardian, regulation and the interface with other legislative provisions, as well as devolution and international issues, including compliance with the UN Convention on the Rights of People with Disabilities.

Please do get involved and join in the discussions on the forum. Between the network members, we have an unrivalled breadth of knowledge and experience of the regulation of care. By responding to this call for evidence we can attempt to have an impact on the lives of those giving and receiving care who are affected by the MCA 2005.

Rosie Harding, July 2013

Caring about mental health inequalities, by Professor Elizabeth Peel

Previous research indicates that, compared to heterosexual people, LGBT young people are more likely to attempt suicide, lesbian and bisexual women are more likely to have drinking problems, and gay and bisexual men are more likely to have body image disorders. Therefore the Risk and Resilience Explored (RaRE) study, funded by the Big Lottery (2010-2015), explores these mental health inequalities in LGBT people in England. The project is led by PACE Health, a London-based charity, in partnership with Prof Elizabeth Peel (University of Worcester), Prof Ian Rivers (Brunel University) and Allan Tyler (London South Bank University) and aims to address the following questions:

  • Which LGBT people have these problems?
  • What are the risk/predictive factors?
  • What are the resilience/protective factors?
  • How do these vary between the study groups and between the study groups and their heterosexual counterparts?

The team has just launched a large-scale Health and Wellbeing survey that is open to anyone over 18 living in England. People of all sexualities whether or not they have experienced mental health problems can participate in the research via https://www.surveymonkey.com/s/a_RaREStudy This offers an opportunity for those who care about understanding health inequalities to share their experiences and perspectives. For more information about the RaRE study contact the project coordinator Nuno Nodin: nuno.nodin@pacehealth.org.uk .

 

Elizabeth Peel

Professor of Psychology & Social Change

Institute of Health and Society

The University of Worcester

Henwick Grove, Worcester, WR2 1AG

Email: e.peel@worc.ac.uk

 

Antipsychotic medications in dementia – time to think again about regulation?

Along with my colleague, Elizabeth Peel, I was invited to write a post for the OUP Blog highlighting the arguments in a paper of ours that was recently published in the Medical Law Review. The blog post draws out several of the arguments from our paper (which is open access for a short period: download it now!), and yet no-one seems to have taken much notice. When we were invited to write for the blog, we were told that the blog has 8,000 subscribers and has over 40,000 visits every month. So why would a contribution on this important issue not make much of a splash?
There could be all sorts of reasons – perhaps it’s not quite on the zeitgeist of where the media focus is on caring for people living with dementia; perhaps the argument in the paper is too ‘legal’ and so not quite amenable to media interest in the blogosphere; perhaps the recently reported reduction in antipsychotic prescribing makes everyone think this is a non-issue; or perhaps until there are other ways to ‘treat’ ‘challenging behaviour’ in dementia, nobody is interested in the limitations of the current methods. It’s hard to tell. Certainly any and all of these might be contributory factors. But I think this is an important issue, and one that it’s worth shouting about, so I’m going to try again here!
In the article ‘He was like a Zombie’: Off-label prescription of antipsychotic drugs in dementia’, we argue that most antipsychotic drugs:

  • are not tested for use in elderly people with dementia;
  • are not licensed for use in elderly people with dementia;
  • have serious side effects including stroke and death when prescribed to elderly people with dementia
  • should be better regulated

We also highlight that in our empirical research, carers of people with dementia report a range of other harms associated with the use of this class of drugs to treat behavioural symptoms in the people they care for. In the paper, we explore the potential for legal redress for these harms and find that there is little or no chance of legal claims being successful.
As we think again about how people who can’t stand up for themselves are vulnerable to abuse at the hands of the professionals responsible for their care (for example the Winterbourne View scandal), we need to think again about all sides of the interface between care, law and regulation. The current regulatory frameworks offer little comfort to those who are harmed by ‘care’ that is not criminally abusive. So as well as thinking again about how we regulate social care, I think the antipsychotics issue demonstrates why we might also need to think again about health care and those who can’t consent to treatment. Without going into the intricacies of medical negligence, people with dementia harmed by the prescription of antipsychotic drugs to treat behavioural symptoms currently have no chance of compensation or access to justice even though it is widely known that they can be harmful. I think it is time this changed. What do you think?

Bringing abortion care home

What to say about Savita? What to say about the story of a woman who dies from septicaemia in Galway, after termination of a miscarrying pregnancy was refused?  The lawyer in me knows that we haven’t heard the full account yet.  But the critic in me thinks about the outpouring of emotion provoked by her husband’s story.  I batter the keyboard to try and stop my own frustrations from taking hold.  What use is yet another comment on yet another woman who has been failed by a health system which refuses to provide abortion care?  But I don’t want to be quiet either.  I want to try and make sense of the awful spectacle of Savita’s seemingly needless death.

I talk to a pregnancy counsellor who works for a Irish pro-choice service.  She has worked for years supporting women with unplanned pregnancies, many of whom decide to travel for abortion.  She has been having a bad time recently in the wake of a sting on pregnancy counselling services, which accused counsellors of giving women poor advice.  She says: “I know why I do what I do, and why I say what I say”.  Everyday she negotiates the moral and legal complexity, which has baffled the politicians for 20 years since the X case.  She doesn’t have the luxury of getting overwhelmed and throwing her hands up in the air because ‘abortion is complex’.  While 6 governments have failed to implement the 1992 X case ruling, which allows abortion when there is a real and substantial risk to the life of the woman, she has listened to women’s assessment of their options.  She knows that women need abortions, even women who have anti-abortion views.  She knows that women make complicated moral judgments about the best course of action in their particular reproductive circumstances.  This public servant has found a way through the legal uncertainty to support women as they travel in search of abortion care.  Imagine if we valued her experience more.  Imagine how abortion law would benefit from understanding complexity as an element of, not an obstacle to, reproductive decision-making.

I listen to Mary Favier of Doctors for Choice on the Pat Kenny show on RTE radio.  Mary calls for the decriminalisation of abortion and the recognition of women’s right to control their own fertility.  She calls on doctors to act and to push up against the imagined boundaries of lawful abortion in Ireland.  It’s such a relief to hear Mary claim public space not just for women in life-threatening circumstances, but also for ordinary pregnant women.  One of the most distressing things has been hearing so many media commentators fixate on the narrowest of legitimations for abortion.  At times the scope of the argument has seemed limited to the meaning of life-saving abortion.  But we know thousands of Irish women end their pregnancies every year for all kinds of reasons.  Yet the mainstream public debate seems to proceed as if medical practice is never about tackling risks to health, or promoting patients’ well-being.  It’s as if women can’t be trusted with moral decisions, decisions whose consequences they will bear.  It’s as if a non-conscious, non-sentient, non-viable foetus has the same moral status as a conscious, sentient, viable woman.  It’s as if there is only an audience for the most distressing, blood curdling stories of abortion need.  But as Mary points out, Savita was also a woman whose request for a termination was refused.  Mary shows us what Irish abortion care could be like if it supported women’s moral agency.  Others like her – Clare Daly, Ivana Bacik, Susan McKay – allow us hope for a politics which addresses the ordinary everyday stories of pregnancy and abortion.

Hungry for information, I flick through my tweets and watch an older clip of Mara Clarke of the London-based Abortion Support Network tell the Dublin Pro-choice Rally, 28 September 2012, about the women they’ve helped over the last 3 years.  Mara talks about the vulnerability and resourcefulness of all kinds of women: rape victims, mothers with families, young asylum-seekers, students, women in gender transition.  She makes ordinary ingenuity come alive as she tells stories of the friends who raise funds and mind children so that women can travel.  Imagine having to ring a complete stranger for help, she says, when you’re under this pressure and need access to abortion.  These ‘strangers’ open their homes and their lives to women who need them for a day or two.  They take it on themselves to reduce the harmful effects of a healthcare system that ignores abortion-seeking women.   And before them ESCORT in Liverpool and the Irish Women’s Abortion Support Group in London (Rossiter, 2009) looked after women who travelled during the 1980s and the 1990s.  This hospitality of strangers makes caring across borders a reality as people connect over the simple act of wanting to help.

The reaction to Savita’s death has made the ‘distant suffering’ (Boltanski, 1999) of abortion-seeking women a little less distant.  Ordinary people keep apologising for not having taken action against Irish abortion law before now.  They’re taking moral responsibility for the legal and medical regime which produced Savita’s death and routinely sends abortion-seeking women abroad.  This failure in our public institutions – in law and in medicine – is at odds with a clear desire to care in other public spaces.  And perhaps that’s all I want to say at least for the moment: This is a terrible tragedy for Savita and her loved ones.  But the wave of revulsion is not just revulsion at what Enright has called the bloodthirsty nature of Irish abortion law.   It’s a wave of connection that’s bringing together these different challenges to an anti-abortion ethos.  We have to find a way to bring abortion care home: to take domestic abortion care beyond questions of life and death and into a respect for the ordinary moral messiness of people’s lives.