Psychiatric institutionalization, femininity, and women’s care giving in Poland

by Agnieszka Doll

Mental illness is often associated with notions of irrationality, unpredictability, and the imaginary threat of violence or possible negligence. For women who have been institutionalized in psychiatric hospitals, the stigma placed upon them takes on a polymorphous status as “mad” and “bad,” directly interfering with normative regimes of femininity. Particularly in societies like Poland with a traditional patriarchal gender order, these women may be seen as “unfit” mothers and “troublesome” wives, disruptive to the “normal” functioning of their families. The cultural script of Polish women as mothers and the primary care-givers cuts across class, profession, and place (Czerwinska, A., Lapniewska, Z., and Piotrowska, J., 2010) .Yet, for women with histories of psychiatric hospitalization, those care giving roles are denied. The Polish Public Opinion Research Center (CBOS) in 2008 and 2012 conducted surveys which show constant agreement among respondents that women with mental illness and previous hospitalization – regardless of the details of their individual prognoses – should be excluded from care taking duties for minors. This impacts both their private and professional lives as, for example, they may be denied employment as nannies or teachers. Even though the survey did not ask whether respondents perceived previously hospitalized women to be “fit” mothers, it illuminated the extent to which stigma of mental illness and institutionalization bears on women’s ability to fulfil societally assigned gender roles. Given that, women with histories of psychiatric hospitalization may experience difficulties in winning custody of their children in family law cases, for instance. When they manage to gain or uphold custody in such cases, to resist future hospitalization and to uphold their care-giving responsibilities they may need to drastically change their daily lives in an attempt to provide “proof” of their sanity (interpreted as orthodox compliance with gender norms) to state agencies, professionals or broader society. Thus, psychiatric examination and classification, particularly when imposed on women who are committed unwillingly, can function as a form of societal and institutional surveillance.

In spite of these serious implications, the process of admission to psychiatric facilities remains under-analysed. Current scholarship generally revolves around the need to find a balance between respect for personal liberties and the state’s right to protect the public from “dangerous” and “mentally ill” individuals. As well, it focuses on the negotiation of treatment needs and legal standards of due process within the context of admission. My doctoral research, designed as an institutional ethnographic study (D. Smith, 2006), aims to explore the procedure of involuntary psychiatric institutionalization of women in Poland, particularly its social organization. This is to gain a broader understanding of how knowledge about women as “pathological” subjects is produced within the process of psychiatric admission, and how this knowledge production occurring in local sites is organized and coordinated by ideological discourses, texts, and the features of organizational contexts. One of the project’s aims is to disrupt the mega-narrative of the official and “authoritative” accounts of psychiatric and legal professionals produced in involuntary admission processes that silence women’s voices and experiences. It is hoped that by illuminating how accounts of “pathological” women are produced within everyday institutional practices the notion of institutionalized women as “mad” and “bad” would be problematized.

References:

Czerwinska, A., Lapniewska, Z., & Piotrowska, J. (2010). Kobiety na “zielonej wyspie”: Kryzys w Polsce z perspektywy gender. Warszawa: Fundacja Feminoteka.

Omyla-Rudzka, M. (2012). Stosunek do chorych psychicznie. Warszawa: Fundacja Centrum Badania Opinii Spolecznej.

Smith, D. (2006). Institutional ethnography as practice. Lanham, Md.: Rowman &n Littlefield.

Wciorka, B., & Wciorka, J. (2008). Osoby chore psychicznie w spolecznstwie: Komunikat z badan. Warszawa: Fundacja Centrum Badania Opinii Spolecznej.

Agnieszka Doll is a PhD Candidate at the Faculty of Law, University of Victoria in Canada. Currently she is a Visiting Doctoral Fellow at the Bielefeld Graduate School in History and Sociology, University of Bielefled in Germany.

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.

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.

 

Rethinking the Care Needs of Older Homeless People

by Rachel Barken and Amanda Grenier

The care needs of older adults experiencing physical and cognitive decline generate much attention in political, popular, and academic debates. Yet, particular subgroups of the older population are often overlooked. Such is the case for older homeless people, whose numbers are increasing across Canada and internationally. Older homelessness is also largely invisible in academic study, although interest is beginning to turn in this direction. Few gerontological works focus on homelessness, and studies on homelessness are often organized around earlier parts of the life course (Crane & Warnes, 2005; McDonald, Dergal, & Cleghorn, 2007). As a result, we know little about older homeless adults’ needs for care.

Our research project, “Homelessness in Late life: Growing Old on the Streets, in Shelters, and Long-term Care” explores the challenges older homelessness brings for aging societies as a whole and for service providers working in housing, shelter and long-term care. It involves a critical policy analysis; qualitative interviews with service providers and older homeless people; and participant observation in homeless shelters in Montreal, Quebec. This blog reports preliminary results from interviews with 15 service providers working with older homeless people. Interviews revealed three findings relevant to the challenges and contradictions of later life homelessness: (1) the need to adapt current approaches to homelessness to better accommodate older people, (2) the need to develop and sustain affordable housing across the life course, and (3) the inherent emotional conflicts and contradictions associated with homelessness in late life.

First, homelessness tends to be approached as a rupture in the life course requiring an emergency response. Support services are often provided in reaction to a fixed event, with the aim of reconnecting people with work or housing.  Interviews with service providers, though, reveal that older homelessness is often the result of marginal and precarious positions over time. The combined implications of social marginalization and older age means that traditional solutions based on work and housing are less able to ‘fix’ the problem of older homelessness. A deeper understanding of the interconnected individual and structural forces leading to later life homelessness is necessary.

Second, older people are caught between various housing and long-term care models. Housing options for older homeless adults in Canada include affordable housing units, alternative housing models, emergency shelters, and residential and long-term care facilities. Yet there is often a disjuncture between housing policies and practices on the one hand, and older homeless adults’ experiences, needs, and abilities on the other. Older people may need to compete against younger groups for subsidised housing. Pensions provide a certain level of income, but this does not address the shortage in supported housing options. Add to this that shelters or rooming houses are not intended as spaces to grow old. They are not adapted to changes in mobility and certainly do not qualify as ‘home’. Long-term care is also often inaccessible to older homeless people. They either cannot afford long-term care, or their needs cannot easily be accommodated in institutional environments.

Our third finding is perhaps most interesting to the debates circulating on this blog. Although workers do not necessarily name it as such, their interviews convey emotional, moral, and ethical conflicts around service priorities, personal associations, and expectations of aging. Their comments that one is ‘not expected to be homeless in later life’ poignantly articulate the conflicts that they experience with regards to aging and marginalisation and a profound helplessness given the lack of service options available for older homeless people.

In sum, homelessness rarely figures in to discussions of later life care. This leaves us with few directives when attempting to care for older homelessness people. We suggest that a life course perspective could be fruitfully applied to understand major pathways into homelessness, particularly risk factors and trigger events, and their prevalence across the life course. With this in place, it is necessary to design housing and care options that suit older homeless people’s diverse needs, abilities, and interests. Finally, it is urgent for discussions of later life care to address the realities of homelessness in particular, and social marginalization more generally. Our project, grounded in empirical data, seeks to generate knowledge that will enable policymakers and practitioners to account for homelessness in their responses to later life care.

References:

Crane, M., & Warnes, A. (2005). Responding to the needs of older homeless people.         Innovation: The European Journal of Social Science Research, 18(2), 137-152.

McDonald, L., Dergal, J., & Cleghorn, L. (2007). Living on the margins: Older homeless    adults in Toronto. Journal of Gerontological Social Work, 49(1-2), 19-46.

* The results discussed in this blog are part of an ongoing study being carried out at the Old Brewery Mission in Montreal, and funded by the Social Sciences and Humanities Research Council of Canada: Homelessness in Late Life: Growing Old on the Streets, in Shelters and Long-term Care: Amanda Grenier (PI), Tamara Sussman, David Rothwell and Jean-Pierre Lavoie.

Amanda Grenier, PhD, is Director of the Gilbrea Centre for the Studies of Aging, Gilbrea Chair in Aging and Mental Health, and Associate Professor in Health, Aging and Society at McMaster University, Canada.

Rachel Barken is a doctoral candidate in the Department of Sociology at McMaster University and Research Assistant on the Homelessness in Late Life research project.

‘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.

 

 

 

 

 

 

‘Preceptorship’ – helping newly qualified nurses ‘thrown in at the deep end’

Preceptorship is support for newly qualified nurses (NQNs) as they transition from studenthood to the demands, and responsibilities, of being a qualified nurse. Preceptorship refers to ‘a period of structured transition for the newly registered practitioner during which he or she will be supported by a preceptor, to develop their confidence as an autonomous professional, refine skills, values and behaviours and to continue on their journey of life-long learning’ (DoH 2010: 11). It is underpinned by a range of government policies and good practice guidelines, including A High Quality Workforce: NHS Next Stage Review which states: ‘A foundation period of preceptorship for practitioners at the start of their careers will help them begin the journey from novice to expert’ (DoH 2008: 72). Preceptorship aims to address how knowledge acquired in nurse training is recontextualised in practice (Evans et al 2010) and how newly qualified nurses (NQNs) adapt to the ‘real world of practice’ (Houghton 2014).

In addition to needing support in developing their clinical skills and self-confidence in their own nursing judgements, many NQNs find time-management in busy clinical contexts a challenge (O’Kane 2012) and, in parallel, experience difficulties in relation to delegation skills. Inability to delegate can lead to NQNs feeling overwhelmed, which can result in burnout and high staff turnover of NQNs. However, despite the need for registered nurses to be competent in delegating and supervising unregistered health care assistants, research suggests that their nurse education does not always equip them with the necessary skills (Hasson, McKenna and Keeny 2013). Preceptorship then becomes a vital means of supporting them in acquiring those skills.

Even though research repeatedly affirms the importance of preceptorship, it is not consistently available to NQNs cross the UK, nor, even if offered on paper, is it always reliably delivered in practice (Higgins Spencer and Kane, 2010) particularly at times where there are considerable restraints upon nursing budgets (Avis, Mallik and Fraser 2013). This means that many NQNs feel they find themselves in ‘Sink or Swim’ situations (Hughes and Fraser 2001). While many will swim, some inevitably will sink. This is a terribly waste not only of training, but also of people who want to be, and could be, competent and confident nurses, provided they are given sufficient support during their transition from student to qualified nurse. Investment in preceptorship can have huge benefits in supporting and retaining NQNs (Whitehead et al 2013) and as such should be made consistently and robustly available to nurses during their initial post-qualifying period.

References
Avis, Mark, Mallik, Maggie and Fraser, Diane M. (2013). ‘”Practising under your own Pin”–a description of the transition experiences of newly qualified midwives.’ Journal of Nursing Management 21(8): 1061-1071
Department of Health (2008). A High Quality Workforce: NHS Next Stage Review. London: Department of Health.
Department of Health (2010) Preceptorship Framework for Newly Registered Nurses, Midwives and Allied Health Professionals. London: Department of Health
Evans, Karen, et al. (2010) ‘Putting knowledge to work: A new approach.’ Nurse Education Today 30(3): 245-251.
Hasson, Felicity, Hugh P. McKenna, and Sinead Keeney (2013) ‘Delegating and supervising unregistered professionals: the student nurse experience.’ Nurse Education Today 33(3): 229-235.
Higgins, Georgina Spencer, Racheel Louise and Kane, Ros (2010). “A systematic review of the experiences and perceptions of the newly qualified nurse in the United Kingdom.” Nurse Education Today 30(6): 499-508.
Houghton, Catherine E. (2014) ‘”Newcomer adaptation”: a lens through which to understand how nursing students fit in with the real world of practice.’ Journal of Clinical Nursing: Advance access, http://onlinelibrary.wiley.com/doi/10.1111/jocn.12451/full
Hughes, Anita J., and Fraser, Diane M. (2011). ‘”SINK or SWIM”: The experience of newly qualified midwives in England.’ Midwifery 27(3): 382-386.
O’Kane, Catherine E. (2012). ‘Newly qualified nurses’ experiences in the intensive care unit.’ Nursing in Critical Care, 17(1): 44-51.
Whitehead, Bill, et al. (2013). ‘Supporting newly qualified nurses in the UK: A systematic literature review.’ Nurse Education Today 33: 370–377.

‘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).

 

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

‘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.