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Consumer participation, Data, digital health, Digital inclusion, Power relations, Technology, Writing

Can open data disrupt power relations in health and enhance consumer participation?

VALA Libraries, Technology and the Future invited my fabulous colleague from Melbourne University Fiona Tweedie and I to participate in a webinar discussion as part of Open Access Week. The webinar was hosted by VALA President, Katie Haden. VALA are an independent Australian based not-for-profit organisation that aim to promote the use and understanding of information technology within libraries and the broader information sector.

Is “Open” always “Equitable”?

The theme for Open Access Week for 2018 is ‘Designing equitable foundations for open knowledge.’ But open systems aren’t always set to a default of ‘inclusive’, and there are important questions that need to be raised around prioritisation of voices, addressing perpetual conscious and unconscious bias, and who is excluded from discussions and decisions surrounding information and data access. There are also issues of the sometimes-competing pressures to move toward both increased openness and greater privacy, the latter issue having much currency in the health domain (and more broadly) at present.

  • If we default to inclusive, what does that look like?
  • How do we address conscious and unconscious bias?
  • How do we prioritise voices, identify who is included and/or excluded from discussions?
  • How do we address the pressure to move toward both increased openness and greater privacy, particularly in the area of health data?

You can download the mp4 file of the webinar, or read a summary of what I had to say below.

Most of what I have learned about how to be a good nurse has come from the consumers I have worked with in my clinical practice. I think the people that live most closely to a phenomenon have a unique microscopic vantage point and that as a researcher and clinician, complementing this lived experience with a telescopic view allows us to see both the big picture and the lived experience. Similarly, my experience of innovations in health have been consumer driven: the initiation of text reminders in a health organisation I used to work for because newly arrived Sudanese women asked for it; health promotion activities that included fun and community building, because Pasifika people in South Auckland wanted something more communal. So I am interested in the emergence of data and technology as democratising enablers for groups that experience marginalisation. Consumers with myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS) who challenged the influential £5m publicly funded PACE trial which shaped research, treatment pathways and medical and public attitudes towards the illness are an example of how making data open and transparent can be transformative.

The PACE trial found that Cognitive Behavioural therapy (CBT) and Graded Exercise Therapy (GET) achieved 22 percent recovery rates (rather than just improvement rates) as opposed to only seven or eight percent in the control groups who did not engage in CBT and GET. The findings contradicted with the experiences of consumers, who suffered debilitating exhaustion after activities of daily living. A five year struggle by Australian Alem Matthees and supported by many scientists around the world who doubted the study’s conclusion resulted in Queen Mary University of London releasing the original data under the UK Freedom of information (FOI) Act at a cost of £250,000. When challenged about the distress that this had caused patients with ME/CFS the researchers claimed to be concerned about the ethics of sharing the data. However, Geraghty (2017) points out:

did PACE trial participants really ask for scientific data not to
be shared, or did participants simply ask that no personal identifiable information (PIIs) be disclosed?

Subsequent reanalysis showed recovery rates had been inflated  and that the recovery rates in the CBT and GET groups were not significantly higher than in the group that received specialist medical care alone. One of the strategies for addressing the lack of transparency in science is to make data open (particularly if another £5m is unavailable to reproduce the study), sharing data, protocols, and findings in repositories that can be accessed and evaluated by other researchers and the public in order to enhance the integrity of research. Funding bodies are now increasingly making data-sharing a requirement of any research grant funding.

https://forbetterscience.com/2016/02/08/pace-trial-and-other-clinical-data-sharing-patient-privacy-concerns-and-parasite-paranoia/

By Leonid Schneider

This story captures the value proposition of making health data open, it can: hold healthcare organizations/ providers accountable for treatment outcomes; help patients make informed choices from options available to them (shared decision making); improve the efficiency and cost-effectiveness of healthcare delivery; improve treatment outcomes by using open data to make the results of different treatments, healthcare organizations, and providers’ work more transparent; be used to educate patients and their families and make healthcare institutions more responsive; fuel new healthcare companies and initiatives, and to spur innovation in the broader economy (Verhulst et al, 2014).

The growing philosophy of open data which is about democratising data and enabling the sharing of datasets has been accompanied by other data related trends in health including: big data-large linked data from electronic patient records; streams of real-time geo-located health data collected by personal wearable devices etc; and new data sources from non-traditional sources eg social and environmental data (Kostkova, 2016). All of which can be managed through computation and algorithmic analysis. Arguments for open data in health include that because tax payers pay for its collection it should be available to them and that the value of data comes from being used by interpreting, analysing and linking it (Verhulst et al., 2014).

According to the open data handbook, open data refers to:

A piece of data or content is open if anyone is free to use, reuse, and redistribute it — subject only, at most, to the requirement to attribute and/or share-alike.

Usually it has three main features:

Availability and Access: the data must be available as a whole and at no more than a reasonable reproduction cost, preferably by downloading over the internet. The data must be available in a convenient and modifiable form.

Reuse and Redistribution: the data must be provided under terms that permit reuse and redistribution including the intermixing with other datasets.

Universal Participation: everyone must be able to use, reuse and redistribute – there should be no discrimination against fields of endeavour or against persons or groups.

Central to which is the idea of interoperability, whereby diverse systems and organizations can work together (inter-operate) or intermix different datasets.

Here are two useful examples of open data being used for the common good. The first concerns statins, which are widely prescribed and cost more than £400m out of a total drug budget of £12.7 billion pounds in England. Mastodon C (data scientists and engineers), The Open Data Institute (ODI) and Ben Goldacre analyzed how statins were prescribed across England and found widespread geographic variations. Some GPs were prescribing the patented statins which cost more than 20 times the cost of generic statins when generics worked just as well. The team suggested that changing prescription patterns could result in savings of more than 1 billion pounds per year. Another study showed how asthma hotspots could be tracked and used to help people with asthma problems to avoid places that would trigger their asthma. Participants were issued with a small cap that fit on a standard inhaler, when the inhaler was used, the cap recorded the time and location, using GPS circuitry. The data was captured over long periods of time and aggregated with anonymized data across multiple patients to times and places where breathing is difficult, that could help other patients improve their condition(Verhulst et al, 2014).

Linking and analysing data sets can occur across the spectrum of health care from clinical decision support, to clinical care, across the health system, to population health and health research. However, while the benefits are clear, there are significant issues at the individual and population level. In this tech utopia there’s an assumption of data literacy, that people who are given more information about their health will be able to act on this information in order to better their health. Secondly, data collected for seemingly beneficial purposes can impact on individuals and communities in unexpected ways, for example when data sets are combined and  adapted for highly invasive research (Zook et al, 2017). Biases against groups that experience poor health outcomes can also be reproduced depending on what type of data is collected and with what purpose (Faife, 2018).

The concern with how data might be deployed and who it might serve is echoed by Virginia Eubanks Associate Professor of Political Science at the University at Albany, SUNY. Her book gives examples of how data have been misused in contexts including criminal justice, welfare and child services, exacerbating inequalities and causing harm. Frank Pasquale in a critique of big data and automated judgement has identified how corporations have compiled data and created portraits using decisions that are neither neutral or technical. He and others call for transparency, accountability and the protection of citizen’s rights by ensuring algorithmic judgements are fair, nondiscriminatory, and open to criticism. However, it is difficult for people from marginalised groups to challenge or interrogate systems or seek redress if harmed for example through statistical aggregation, so fostering dissent and collaboration by public authorities is necessary. Groups with the worst health outcomes have limited access to interventions or the determinants of health to begin with. So, it’s important to ensure that policy and regulation drive structural changes rather than embedding existing discrimination that exposes minority groups to increased surveillance and marginalisation (Redden, 2018).

The advent of Australia’s A$18.5 million national facial recognition system, the National Facial Biometric Matching Capability will allow federal and state governments access to access passport, visa, citizenship, and driver licence images to rapidly match pictures of people captured on CCTV “to identify suspects or victims of terrorist or other criminal activity, and help to protect Australians from identity crime“. The Capability is made up of two parts, the first comprises a Face Verification Service (FVS) which is already operational and allows for a one-to-one image-based match of a person’s photo against a government record. The second part is expected to come online this year and is the Face Identification Service (FIS), a one-to-many, image match of an unknown person against multiple government records to help establish their identity. Critics are concerned at the false positives that similar technologies have found elsewhere like the US and their failure to prevent mass shootings.

Me checking out the biometric mirror at Uni Melb

Me checking out the biometric mirror an artificial intelligence (AI) system to detect and display people’s personality traits and physical attractiveness based solely on a photo of their face. Project led by Dr Niels Wouters from the Centre for Social Natural User Interfaces (SocialNUI) and Science Gallery Melbourne at University of Melbourne.

Context is also important when considering secondary use of data. Indigenous voices like Kukutai observe that openness is not only a cultural issue but a political one, which has the potential to reinforce discourses of deficit. Privacy also has nuance here, public sharing does not indicate acceptance of subsequent use. Group privacy is also important for those groups who are on the receiving end of discriminatory data-driven policies. Open data can be used to improve the health and well being of individuals and communities. The efficiencies and effectiveness of health services can also be improved. Open data can also be used to challenge exclusionary policies and practices, however consideration must be given to digital literacy, privacy and how conditions of inequity might be exacerbated. Importantly, ensuring that structural changes occur that increase the access for all people to the determinants of health.

References

  • Eubanks V. Automating Inequality: How High-Tech Tools Profile, Police, and Punish the Poor. St. Martin’s Press, 2018.
  • Faife C. The government wants your medical data. The Outline, https://theoutline.com/post/4754/the-government-wants-your-medical-data (2018, accessed 16 October 2018).
  • Ferryman K, Pitcan M. Fairness in Precision Medicine. Data and Society, https://datasociety.net/wp-content/uploads/2018/02/Data.Society.Fairness.In_.Precision.Medicine.Feb2018.FINAL-2.26.18.pdf (2018).
  • González-Bailón S. Social science in the era of big data. POI 2013; 5: 147–160.
  • Kostkova P, Brewer H, de Lusignan S, et al. Who Owns the Data? Open Data for Healthcare. Front Public Health 2016; 4: 7.
  • Kowal E, Meyers T, Raikhel E, et al. The open question: medical anthropology and open access. Issues 2015; 5: 2.
  • Krumholz HM, Waldstreicher J. The Yale Open Data Access (YODA) project—a mechanism for data sharing. N Engl J Med 2016; 375: 403–405.
  • Kukutai T, Taylor J. Data sovereignty for indigenous peoples:current practice and future needs. In: Kukutai T TaylorJ , ed. Indigenous Data Sovereignty: Toward an Agenda. Acton,Australia: ANU Press; 2016: 1–22
  • –Lubet S. How a study about Chronic Fatigue Syndrome was doctored, adding to pain and stigma. The Conversation, 2017, http://theconversation.com/how-a-study-about-chronic-fatigue-syndrome-was-doctored-adding-to-pain-and-stigma-74890 (2017, accessed 22 October 2018).
  • –Pitcan M. Technology’s Impact on Infrastructure is a Health Concern. Data & Society: Points, https://points.datasociety.net/technologys-impact-on-infrastructure-is-a-health-concern-6f1ffdf46016 (2018, accessed 16 October 2018).
  • –Redden J. The Harm That Data Do. Scientific American, 2018, https://www.scientificamerican.com/article/the-harm-that-data-do/ (2018, accessed 22 October 2018).
  • –Tennant M, Dyson K, Kruger E. Calling for open access to Australia’s oral health data sets. Croakey, https://croakey.org/calling-for-open-access-to-australias-oral-health-data-sets/ (2014, accessed 15 October 2018).
  • –Verhulst S, Noveck BS, Caplan R, et al. The Open Data Era in Health and Social Care: A blueprint for the National Health Service (NHS England). http://www.thegovlab.org/static/files/publications/nhs-full-report.pdf (May 2014).
  • –Yurkiewicz I. Paper Trails: Living and Dying With Fragmented Medical Records. Undark, https://undark.org/article/medical-records-fragmentation-health-care/ (2018, accessed 23 October 2018).
  • –Zook M, Barocas S, Crawford K, et al. Ten simple rules for responsible big data research. PLoS Comput Biol 2017; 13: e1005399.
April 29, 2023/by ruth
https://ruthdesouza.dreamhosters.com/wp-content/uploads/2023/04/Ruth-Niels-Wolter-scaled-1.jpg 2560 1920 ruth http://ruthdesouzastage.local/wp-content/uploads/2024/12/spa_logo-300x138.png ruth2023-04-29 03:09:242023-04-29 03:09:24Can open data disrupt power relations in health and enhance consumer participation?
Australia, Cultural safety, Indigenous, Inequalities, Multiculturalism, Nursing, Power relations, Racism, Writing

Five myths about cultural safety

The new Codes of Conduct for Nurses and Midwives in Australia have made the news. The Nursing and Midwifery Board of Australia  (NMBA) have set expectations around culturally safe practice in the health system for nurses and midwives who comprise the largest workforce in healthcare.The incorporation of cultural safety into nursing in Australia has support from The Council of Deans of Nursing and Midwifery:

The Council of Deans of Nursing and Midwifery ANZ acknowledge Aboriginal & Torres Strait
Islander people as the First Nations people of Australia. The Council supports the
development and implementation of cultural safety in education programs, practice, and
research activities for nurses and midwives. It also recognises that the origins and context
informing the development of cultural safety arise from different historical, political, economic
social and ideological positions in Australia and New Zealand and therefore this will be
acknowledged separately

However, this explicitly anti-racist and equity informed strategy has not gone down well with The Nurses Professional Association of Queensland Inc (NPAQ). Run by union-buster Graeme Haycroft who calls the Codes ‘racist’,  the association brands itself as a non party political alternative to existing unions. Haycroft has garnered a deluge of support (despite not being political) and claims NPAQ members were not consulted and 50 per cent of NPAQ members are opposed to the Codes. Interviewed by Sky News host Peta Credlin, supporters like  Andrew Bolt have jumped into the fray with headlines screaming: Nurses forced to announce ‘white privilege’ is new racism. The hyperbole has been astounding:

What if… they’re within seconds of dying and the nurse has to fling themselves into action but they have to stop while they just announce their white privilege?

A clear early rebuttal came from The Queensland Nurses and Midwives’ Union (QNMU) Secretary Beth Mohle when Cory Bernardi first expressed indignation:

These codes were the subject of lengthy consultations with the professions of nursing and midwifery and other stakeholders including community representatives. This review was comprehensive and evidenced-based. Our union and our national body the Australian Nursing Midwifery Federation (ANMF) were active participants in these consultations.

The codes, written by nurses and midwives for nurses and midwives, seek to ensure the individual needs and backgrounds of each patient are taken into account during treatment.

There’s no doubt cultural factors, including how a patient feels while within the health system, can impact wellbeing. For example, culture and background often determine how a patient would prefer to give birth or pass away.

Every day, nurses and midwives consider a range of complex factors, including a patient’s background and culture to determine the best treatment. These codes simply articulate what is required to support safe nursing and midwifery practice for all.

Further rebuttals have entered the public sphere, including a joint statement from Nursing organisations including the Nursing and Midwifery Board of Australia; Australian College of Midwives (ACM); Australian College of Nursing (ACN); Congress of Aboriginal and Torres Strait Islander Nurses and Midwives and A/Federal Secretary Australian Nursing and Midwifery Federation which have also been supported by the Australian Healthcare and Hospitals Association, Public Health Association of Australia, Consumers Health Forum of Australia and National Rural Health Alliance. As CEO of CATSINaM Janine Mohamed observes in a blog for Indigenous X “Australia is playing a game of ‘catch up’”. Indeed, cultural safety is an approach developed by indigenous Māori nurses that is embedded in the undergraduate national nursing curriculum, and broadly applied across marginalised groups in New Zealand. The Nursing Council of New Zealand introduced the concept into nursing and midwifery curricula in 1992, developing the expectation that nurses practise in a ‘culturally safe’ manner. It wasn’t without resistance, however. As a nurse, academic and researcher, cultural safety has informed my professional practice. I completed a PhD which attempted to extend the theory and practice of cultural safety to both critique nursing’s Anglo-European knowledge base, and to extend the discipline’s intellectual and political mandate with the aim of providing effective support to diverse groups of mothers (Migrant Maternity).

I am pleased to contribute to the conversation about cultural safety and nursing. I wrote this piece called Busting five myths about cultural safety – please take note, Sky News et al for Croakey. My appreciation to Melissa Sweet and Mitchell Ward from Rock Lily Design for the terrific infographic.

Myth 1

Cultural safety is creating racism, not eliminating it. It’s political correctness gone mad!

Correction: Race is a proven determinant of health. The Nursing and Midwifery Codes of Conduct acknowledge racism and attempt to reduce its impact on health.

Australia is a white settler society like the United States, Canada and New Zealand. In such settler societies, colonisation and racism have had devastating effects on Indigenous health and wellbeing. These include: the theft of land and economic resources; the deliberate marginalisation and erasure of cultural beliefs, practices and language; and the forced imposition of British models of health over systems of healing that had been in Australia for millennia.

Along with the systematic destruction of these basic tools for wellbeing, interpersonal racism has also contributed to a reduction in access to health promoting resources for Indigenous communities. Cultural safety was developed and led by Indigenous nurses in New Zealand to mitigate the harms of colonisation and improve health care quality and outcomes for Māori, and this has been extended by nurses in Australia, Canada and the US.

Evidence demonstrates that health system adaptations informed by a cultural safety approach have benefits for the broader community. For example, in New Zealand, the request by Māori to have family involved in care (whānau support) have led to a more family-oriented health care system for everyone.

Myth 2

I’m white but I’ve had a hard life, who is to say that I am privileged? Why am I being called racist for being white? That’s racist! I am a nurse, I’ve been abused, I am not privileged.  I fought hard for everything I have and have achieved today.

Correction: Whiteness and white privilege refers to a system, they are not an insult.

Scholar Aileen Moreton-Robinson points out that British invasion and colonisation institutionalised whiteness into every aspect of law and policy in Australia. One of the first actions of the newly formed Australian nation state in 1901 was to pass the Immigration Restriction Act restricting the entry of non-white people.

The White Australia policy ended in 1962, when some of our lawmakers today were adults. Unsurprisingly, politicians have reflected these assumptions as they have demonised successive groups of migrants and refugees.

This culture of whiteness confers dominance and privilege to those who are located as white, but is largely invisible to them, and very visible to those who are not white. Being white in a settler colony like Australia means that you can move through daily life in a world that has been designed by people who are white for people who are white.

Even accounting for class and poverty, people who are white experience privileges that are not available to people of colour. White people can’t actually be systematically oppressed on the basis of their race by Indigenous people or people of colour, because the colonial systems of governance are still in force.

As the comedian Aamer Rahman points out, so called “reverse racism” would only exist under circumstances where white people had been intergenerationally marginalised from the social and economic resources of the nation on the basis of their race. The way Graeme Haycroft from the Nurses Professional Association of Queensland Inc attempts to create equivalence between the inconvenience of having to think differently about health with generations of dispossession is farcical and insulting.

Myth 3

Why can’t we treat everyone with respect? Dividing people into categories of oppressors and victims isn’t helpful.  I respect each patient and their diversity as I respect all the nurses I work with and their cultural diversity.

Correction: No matter what individuals believe, entering the health system is not always a safe experience for cultural minorities. Providing tailored care where possible helps the health system work for everyone.

One size does not fit all. It’s not helpful to treat everybody the same or to say that one does not see colour. How one shows respect varies from one person to the next. Some things work for some people, while others don’t.

Many nurses and midwives already tailor health care to people’s bodies, genders, class and sexuality. For example, the grumpy old entitled man is a well-known “type” of patient that nurses have dealt with for generations, disrupting their own routines and responding to patient demands in order to get them to accept the care required.

Cultural safety promotes an understanding of the culture of health and asks nurses and midwives to be learn to be more responsive to the needs of the patient generally, and this only benefits patients.

Cultural safety asks caregivers to challenge biases and implicit assumptions in order to improve healthcare experiences for Aboriginal and Torres Strait Islander peoples. In the codes, cultural safety also applies to any person or group of people who may differ from the nurse/midwife due to race, disability, socioeconomic status, age, gender, sexuality, ethnicity, migrant/refugee status, religious belief or political beliefs.

In other words, where “business as usual” is designed for white people, cultural safety is for everyone.

Myth 4

Why is cultural safety being regarded in the new Codes of Conduct as equally important to the patient as clinical safety? Doesn’t that devalue clinical care?

Correction: Cultural safety enhances clinical safety.

People are more likely to use health services that are appropriate, accessible and acceptable. If people don’t use health services because they do not trust them or find them unsafe, then they are more likely to become very ill or die unnecessarily.

The health system is not accessed equally by all Australians who need it. For example, Aboriginal and Torres Strait Islander people access health services at less than half of their expected need. Safety and quality of care are also linked with culture and language. Research shows that people from minority cultural and language backgrounds are more at risk of experiencing preventable adverse events compared to white patients.

In Australia lesbian, gay, bisexual, transgender, queer, and intersex (LGBTQI) people often receive inappropriate medical care, and experience health inequities compared to the general population around drug and alcohol use; sexual health and mental health issues.

Discrimination, transphobia, homophobia and a lack of cultural safety from health professionals discourage help seeking. Having services that are welcoming and safe would facilitate equitable health outcomes for all these groups.

Myth 5

There is no objective assessment of what constitutes “cultural safety”.

Correction: Only the person and/or their family can determine whether or not care is culturally safe and respectful.

The most transformative aspect of cultural safety is a patient centered care approach, which emphasises sharing decision-making, information, power and responsibility. It asks us as clinicians to demonstrate respect for the values and beliefs of the patient and their family; advocating for flexibility in health care delivery and moving beyond paternalistic models of care.

Patient-centred care is institutionalised in the Australian Charter of Health Care Rights (ACSQHC, 2007) and the Australian Safety and Quality Framework for Health Service Standards (2017) Partnering with consumers (Standard 2).

Cultural safety challenges nurses and midwives to work in partnership with people and communities but acknowledges that the system is weighted towards the interests of those who work in the system. We think we give the same care to everyone, but everyone experiences our care differently.

Once we understand ourselves and our health system as having a culture that privileges some people over others – whether we are conscious of it or not – we can get on with the real work of implementing better healthcare experiences for Aboriginal and Torres Strait Islander peoples and other marginalised groups.

March 26, 2018/by ruth
https://ruthdesouza.dreamhosters.com/wp-content/uploads/2018/03/CulturalSafety5-1.jpg 1333 1151 ruth http://ruthdesouzastage.local/wp-content/uploads/2024/12/spa_logo-300x138.png ruth2018-03-26 20:52:552018-03-26 20:52:55Five myths about cultural safety
Cultural safety, Education, Health, Inequalities, Nursing, Power relations, Professional development

How do we teach ethics? Intersectionality, care failure and moral courage

As a clinician and educator, I have long been interested in how to prepare nurses for professional practice. Schon uses a metaphor of terrain made up of high, hard ground overlooking a swamp which Street (1991) has extended to nursing practice. While some clinical problems can be resolved through theory and technique (on hard ground), messy, confusing problems in the swampy ground do not have simple solutions, but it is critically important to practice that they are resolved. One way in which I have attempted to open up and create new collective reflective spaces is through using forum theatre to facilitate reflection and culturally safe practice.

It is the swampy ground that interests me, where utilitarian, techno-rational solutions are limited. As pressure increases in undergraduate nursing curricula,  having the time to develop skills and capacities for negotiating ethical relationships can be compromised. Simultaneously the concept of  intersectionality, offers an intervention to challenge a reductionist focus on a single axis of difference within a largely white feminist nursing frame. Can the concept of intersectionalitybe integrated into nursing in ways that are true to the politics that black feminists aspired to?   In this article written with colleagues at Abertay University, Scotland we begin to examine these issues as part of a larger conversation.

Ion, R., DeSouza, R., Kerin, T., Teaching ethics: Intersectionality, care failure and moral courage, Nurse Education Today (2017), doi:10.1016/j.nedt.2017.12.023

Highlights

  • Provides a critical discussion of ethics teaching arguing that it must recognise frameworks from outside the Anglo-European tradition.
  • Drawing on examples of care failure, racism and sexism, argues that there is evidence that some nurses struggle to practice in accordance with ethical guidance.
  • Identifies intersectionality, the culture of practice and moral courage as fundamental to enabling nurses to practice in accordance with ethical guidance.
  • Presents a case for an approach to applied approach ethics education, which recognises the complexity and diversity of practice.

Introduction

Ethical practice is an unambiguous requirement for nurses and midwives in guidance from across the world (ICN 2012). As a profession characterised by its often intimate involvement with vulnerable others and where matters of life and death and all points in between are at stake, it is right and proper that our respective professional organisations should set out clear expectations for practitioners. In this paper we argue that while an expectation of ethical nursing is commendable, its realisation in the real world is often far from straightforward. In doing this we address three issues. First, we draw attention to some every-day and some less common ethical dilemmas which nurses encounter – we argue that these constitute complex problems, which are further compounded by situational and cultural factors. Second, we expose the reality of unethical practice, arguing that it may be more common than the profession would like to believe. Finally, we consider the role of education in preparing and supporting the nursing and midwifery workforce. We argue for a reinvigorated approach to ethics education, which takes account of the reality of contemporary nursing and recognises the complexity of practice – here we pay particular attention to intersectionality, power, oppression and moral courage. We conclude by presenting some thoughts on how this might be operationalised in curricula.

Every-day and unusual problems.

While some ethical issues may be less common than others, nurses are faced with real world ethical dilemmas on a daily basis. By ethical, we mean decisions about how to engage with others, or respond to situations where action or omission might adversely impact some aspect of another’s experience. Ethical problems do not just involve the interface between nurses, patients, families and communities, but also extend to inter-staff relationships, and relationships between staff and organisations. Examples might include questions about how best to secure the consent of a patient with dementia in order to assist with personal care, to decisions about sharing information with a patient about a poor prognosis, or whistleblowing when faced with care failure. We contend that these negotiations require a complex blend of technical skill, knowledge and sensitivity. It is perhaps easier to see the ethical challenges, which might be raised in the breaking of bad news, or when considering whistleblowing – few would dispute the difficulties associated with these scenarios, but an ethical dimension may be less immediately obvious in the former, but much more frequently encountered case of consent to personal care. With a little examination, however, if we recognise that personal care involves an intimacy, which is defined by multiple factors including age, gender, culture, class, sexuality and previous experience, the issue becomes less opaque. To understand the complexities of providing personal carefully, and to deliver it professionally, requires significant knowledge of all of these areas, as well as the ability to deploy that knowledge, and a concomitantly high level of technical skill. Personal care is not a task, it is an action loaded with significance for both the recipient and the caregiver and is embedded in relationships shaped by social, cultural and historical factors. Similar points might be made about the use of restraint in mental health settings. An instrumental view of this intervention might frame it as a technical skill requiring training in physical procedure and some knowledge of risk. This would be to overlook the huge personal significance that should be attached to the act of preventing a fellow human being from retaining control of their body and movements – action which is a legal expression of power over another, and which in other circumstances would be considered to be a case of assault. Few would argue that this intervention should be used sparingly, but for front line staff it may sometimes be the only option. In these circumstances, while adherence to policy and guidance is critical, the extent to which these can ever address the complexity and sensitivities involved in exerting physical power over another is questionable – in our view action in this context also requires an ability to draw on and apply a deep ethical knowledge.

Similarly, while policy can guide those nurses who provide care for hostile combatants in a military situation, or with prisoners in high security settings, or in the complex and politically charged area of refugee health care in detention centres, its application requires both an understanding of, and an ability to operationalise, ethical thinking. Schon’s (1987) metaphor of the world of professional practice resembling terrain made up of high, hard ground overlooking a swamp is useful here. As, Street (1991) observes, there are some clinical problems that can be resolved through theory and technique (on hard ground), while messy, confusing problems in swampy ground do not have simple solutions, but their resolution is critical to practice.

Evidence of unethical practice.

Given then the importance assigned by the profession to ethical practice and the potential challenges to its realisation in the often messy clinical world, it makes sense to take stock and reflect on the extent to which we can be confident that nurses practice ethically and manage ethical problems with confidence. Evidence of racism, gender discrimination and care failure tell us that this may not always be the case and that we have good reason to be concerned about the ability of some nurses and midwives to practice according to ethical guidance. With regard to racism, DeSouza’s (2014) study of the maternity experiences of Korean new mothers in New Zealand and Mapedzahama’s (2012) study of black African nurses working in Australia shows that racism is experienced both as a care recipient and as a colleague. A similar picture emerges regarding gender diversity. Discussing the situation in the United States and Canada, Kellett and Litton (2016) argue that many educational programmes have failed to grasp this agenda and thereby fail to adequately prepare students for the world of practice.

In relation to care failure, Reader & Gillespie (2013), noted evidence of patient neglect and poor care across a range of settings in Australia, Europe and North America. These included failure to meet essential care needs, and examples of abuse and neglect. We should be concerned about the extent to which those who participate in failures of this type understand the requirement for ethical practice. In addition, a review by Jackson et al. (2014) indicates many of those who witness poor care, make the decision to let it go without censure or sanction. Although this may be understandable in some circumstances, for example, where these is a genuine fear that harm may come to the whistle-blower, inaction of this type is surely not underpinned by a recognisable ethical framework, nor is it in keeping with professional guidance. In light of the above, we contend that, there is reason to believe that some nurses struggle to practice in accordance with professional guidance in this area.

Education and the ethics agenda.

Our focus here is on the role of education in the development and maintenance of ethical practice. However, educational preparation can only play a part in this process. Registrants will spend the great majority of their time in practice and it is therefore imperative that care is taken to ensure that, as far as is possible, the practice environment is one in which doing the ‘right thing’ is always the easier option. Given this, what then can education do?

It is conceivable, although hopefully very unlikely, that some nurses consciously select to behave unethically in spite of a detailed understanding of the field and their responsibilities to patients, carers and colleagues. We consider these individuals to be rogue practitioners who have no place in the profession – the role of education here is to try to identify and screen out such people at the earliest point possible – we accept that while this is desirable the extent to which it is achievable is questionable.

It may be that some others who breach ethical guidance were fully prepared in their undergraduate studies for the challenges they might face, but that time has somehow diluted and dissipated this preparation. If this is the case, then educators need to consider how they might work with students to ensure that learning occurs but, equally importantly, that it is maintained and built upon in the years after registration. It is also possible that initial preparation programmes failed to deliver on the ethics agenda – either through significant omission, or by delivery in a manner, which framed ethics as an abstract subject without a clear practical application. The challenge here is to for educators to deliver ethics teaching in a way which resonates with the reality of practice and which is clearly of practical benefit to students. The principle in these circumstances should be to create an ethics, which empowers nurses to do the right thing, rather than one, which constrains them from doing the opposite.

What might an education in applied ethics for nurses look like?

The extent to which educational programmes address ethics is probably dependent to some extent on faculty make up. Where individuals have an interest in the topic, it is likely to prosper. Conversely, where this is not the case, its treatment is likely to be more cursory. Some version of Kant’s categorical imperative, the utilitarianism of John Stuart Mill, virtue ethics and the principles of autonomy, beneficence, non- maleficence and justice are likely to be present in most courses, albeit to a greater or lesser extent. There is no question that all have much to offer, but nursing is a global profession and our major cities are culturally diverse. Add to this, the equally heterogeneous health workforce, and it becomes clear that the ability to work with complexity, ambiguity and uncertainty in a culturally safe way may require considering ethical frameworks from other locations if we are to avoid the pitfall of assuming that the common ethical frameworks of Western Europe and North America make sense to populations whose belief systems were forged elsewhere. Assuming therefore, that a commitment to common ethical framework will suffice may be fundamentally flawed – educators need to prepare nurses for a world, which will require them to draw on knowledge of a range of philosophical ideas, including those outside Anglo-European traditions in order to determine the appropriate course of action in a given situation.

As well as taking this broader perspective, educators also need to consider the growing interest in making gender, race and class central to equity agendas in health. Typically, the reductionist single focus of biomedicine has privileged these social structures in isolation from each other viewing them as parallel, rather than as being mutually constitutive and maintaining each other. Derived from African American theorising and activism, the view that systems of oppression are interlocking assumes that attempts to dislodge one axis of oppression will impact on another. Given we all occupy positions in society that privilege particular identities whether gender, race, or class, intersectionality is a prompt to consider how these positions influence and affect one another and where power lies (or doesn’t lie). It is not enough to merely look outside ourselves for explanation; we must also examine our own complicity in oppression. This examination must consider individual and institutional raced, classed, and gendered identities and how they impact on the work we do (Van Herk et al. 2011). In our view, educational programmes should provide space for critical review of staff and student individual gender, race, and class identities, as well as how our intellectual and political institutions and their agendas reinforce or diminish those identities in both the academy and in the clinical setting. Our point here is that ethical practice requires an awareness of the multifaceted nature of power and disadvantage, which cannot be found in more traditional one-dimensional accounts of health inequality.

Ethical practice requires action as well as the ability to recognize difficulties and dilemmas. Roberts (2016) has noted that inaction in the face of poor care is often justified by explanations, which focus on situational factors. Drawing on Sartre’s notion of freedom, he argues that these justifications do not stand up and that we are fundamentally free to act, albeit with consequences, if we chose to do so. Here inaction is a choice which is freely made and which privileges the needs of the self over ethical action. For many, the idea of sacrificing self-interest in preference to speaking out against injustice is understandably frightening and plays into the kind of hero stereotype which few can live up to. These fears may be particularly acute in the current economic circumstances where concerns about job security are widespread. If then we are to expect nurses to manage complex ethical problems and to be accountable for these we need to ensure that our educational programmes do more than just provide theoretical understanding. They must seek to equip practitioners with the moral courage and personal resilience required to do the right thing in difficult circumstances – specifically to take action based on one’s ethical beliefs in the knowledge that some adverse personal outcome might result. While we offer no template for how this might be done, as this will be dependent on circumstance, need and resources, it is clear that it cannot occur in isolation. Drawing on the work of Gallagher (2011) moral courage is most likely to be demonstrated when the desire of the individual to do the right thing is matched by a practice culture where doing so is the easier option. Educators must then work with their clinical partners to ensure that students are only placed in environments which have an explicit commitment to ethical practice, and where this is demonstrated through the attitudes and behaviours of all staff and in the leadership style of managers. Without this, we run the risk of expecting ordinary people to behave heroically in the kind of toxic environments, which were described by Francis (2015) in his reflections on care failure in the UK.

Conclusion

While ethical practice lies at the heart of good nursing care, evidence of poor care, racism and sexism suggest that some nurses fail to live up to the standards set by the profession. There may be a number of reasons for this, including both the complex nature of care and the diverse populations which nursing serves. Elements of educational preparation may also be flawed. We have argued that in order to address this agenda, educators need to deliver ethics teaching in a manner, which recognises this complexity and diversity. To do this, they must to move away from a mono-cultural approach, which privileges the Anglo-European tradition. This revised approach should consider the issue of intersectionality – a perspective that provides space to consider issues such as power and control in health, social and structural inequities in practice and in education, and the role of class, gender, ethnicity and age in the development of health problems and the experience of health care.

Simply educating nurses about ethics will not on its own solve the problem. We also need to help practitioners to develop their capacity to make ethical decisions and to take action to the basis of these. Ultimately, the environments in which nurses work need to be places which welcome critical reflection and value open discussion. If these things can be achieved, then practicing ethically by managing the everyday and sometimes extraordinary moral dilemmas, which face nurses, may become an easier option.

January 4, 2018/by ruth
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Australia, Consumer participation, digital health, Digital inclusion, Health, Inequalities, Media, Models of care, Power relations, Research, self-tracking, Technology, wearable technology

Ruth De Souza on Wearable Technology

I am speaking at the WT | Wearable Technologies conference in Sydney next month. I spoke to Wearable Technologies Australia (WTA) about the future of the wearable tech industry and some of the challenges the industry is facing. Check out the  full program here.

Here’s a link to the interview we did and I’ve also reproduced it in full below.

WTA: Tell us a little bit about yourself and your journey within the wearable technology space

RDS: I am a nurse, educator and researcher by background and currently work in a unit called the Centre for Culture, Ethnicity and Health at North Richmond Community Health Centre in Melbourne. I came from Monash University to this role with an interest in translating research into practice. I was really interested in doing research in the community and being based there, so that there wasn’t such a big lag between research and knowledge implementation. Wearable tech seemed a good area to explore in a community setting where there is a high percentage of overseas-born residents (38%). Many speak a language other than English at home which has an impact on health literacy. I have been working with colleagues at the University of Melbourne and Paper Giant using “design probes” to engage women from culturally and linguistically diverse (CALD) backgrounds in discussions about health tracking and wearable health technologies in the context of pregnancy and parenting. We started with a stakeholder forum where we explored the research issues around wearable tech and cultural diversity to develop an agenda. More recently with the the University of Melbourne we have conducted a health self-tracking week where we provided daily community education sessions on a range of topics including diabetes and nutrition and self-tracking. Before the end of the year we will be following up with interviews with trackers and asking them about the barriers and enablers to self-tracking.

WTA: Wearable Tech is the next big thing now. Where do you see the industry heading in the next 5 years?

RDS:I am interested in what changes need to be made in health care systems to really maximise the benefits of Wearable Tech. What kinds of educational preparation will the future health workforce need? How will health workers need to modify their roles from being traditional gate-keepers of information in light of the democratisation of information access? What skills will they need to support patients who are activated, motivated and informed? How will health care systems need to change so they can really make the most of patient generated health data? How will workflows and practices change in order to accommodate the new models of care that are emerging with wearable tech?

WTA: According to your expertise in the wearables space which industry do you think will be impacted most by wearable technologies in the next few years

RDS: Technology is moving faster than the health care and education industries. In order to realise the benefits of advances in wearable tech, it’s going to be crucial for the health care workforce to be well prepared educationally and to develop digital literacies both at the undergraduate level and then in terms of continuing education and training. There’s going to have to be a huge shift not just in terms of knowledge and skills, but also in terms of understanding how to be more collaborative in health care.

WTA: Do you think personal IoT has a sustainable future? Will people need more than one platform to handle all their wearable devices?

RDS: I think interoperability is a big issue. Merely generating personal health data without the capacity to have it integrated into your health care means that the potential benefits may not be realised. For this our current models of care and institutional systems need to become more agile and nimble. Many health workers are sceptical about the benefits of wearable technology and concerned about who gets to benefit from the aggregation of health data. They need reassurance about the ethical treatment of data.

WTA: What do you think is the biggest challenge within the wearable technology industry?

RDS: I think the biggest challenge is how wearable technologies can work for people who are marginalised. Working in community health as a researcher I am interested in what wearable self tracking devices mean for people who don’t fit the wealthy, worried, well and white demographic, that typically wearables are marketed to. There is an urgent need to bring people and communities into processes of information handling that are more transparent and accountable. Health workers adhere to codes of conduct and have a duty of care, I’d like to see the developers of technologies engage in more careful scrutiny and have more transparency about the uses of data. I think also that if wearable tech is to be democratised and benefit everyone then communities who are wary of surveillance must have greater control of their data and personal health information.

November 13, 2017/by ruth
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Cultural safety, Education, Feminism, Inequalities, Power relations, Research, Writing

What can The Handmaid’s Tale teach us about intersectionality in institutional life?

Margaret Atwood’s The Handmaid’s Tale focuses on women living in a theocratic totalitarian regime in a newly created dystopian, pronatalist society called Gilead. The regime attributes declining fertility to women’s rights, same sex relationships and an environment damaged beyond repair, which it solves with  the creation of a society predicated on women stratified into their biological destinies to reproduce (Handmaids) or to fulfil household obligations in the private sphere (Marthas). The women are all white, and the story is told through Offred, the plucky white narrator enslaved in a white male supremacist society, where all the people of color have been banished to ‘the colonies'(we are also left uncertain about whether this includes indigenous peoples).  Margaret Attwood doesn’t need to attend to characters of color in the book because in a matter of sentences we already know that they are not included in this new world. This lets Attwood off the hook for engaging with with characters of color in the novel. However, critiques of the book from an intersectional perspective have noted that the narrative banishment comes to extrapolate white women’s experiences as representative of the experiences of all women, even though many of the exploitative and cruel mechanisms to curtail maternity and bodily autonomy used on the white women were used specifically against women of colour in actual North American history that underpins the life of the author and the novel. Or were used on enslaved Africans in the United States including public lynchings and being named after their owners.

The television version attempts to address the invisibility and exclusion of the book where people of color were banished or exterminated. People of colour are visible on screen, as loving husbands, loyal running mates, a daughter, a housekeeper.  The women of color characters are dispersed through the stratified roles of Handmaids or Marthas which also assumes levels of social mobility. But these characters are merely backdrop cardboard cutouts, holograms, one-dimensional, devoid of depth in this white supremacist tale. Characters like Luke and Moira don’t get to explore their racial identities, much less how religious totalitarianism would specifically affect their racialised experiences. In ignoring racism, the show misses an opportunity to show how racism would manifest and evolve in a puritanical theocracy. In the show, The Handmaid’s Tale assumes that racism has been solved or that it is trumped by gender in the cause of preserving fertility. But there is a lost opportunity to consider ‘racist sexism’, that is how policies and practices that discriminate against women, also discriminate in different ways against racialised women. It also fails to acknowledge that America has always been a dystopia for people of color or that American dystopia is founded on anti-Black violence.. It appears on the surface that all subjects other than the commanders and their wives are treated in much the same way as each other. Seemingly the biblical rules of law are applied equally for transgressions. But Bastien asks: 

Are white Commanders and their wives really okay with having a handmaid of color? Is there a caste system for handmaids of color in which some are considered more desirable than others? Do Commanders of color have the same privileges as their white counterparts? If Gilead is meant to imagine a possible future for America, how could deeply entrenched racial dynamics disappear?

In this color-blind, post-racial idyll, there are people of color, but they are hollow and we know nothing about them, past or present. Evan Narcisse suggests it is like the comment made when you’re a non-white person in a predominantly white institution: “When I look at you, I don’t see a marginalised/minority person, I just see a person.” Although meant kindly, in its unmarked privilege it erases the fact of your difference and what it means to inhabit your body and your life. Whiteness is still the unacknowledged default. As Stephanie Brown observes, the men in power are white, as are most of the women. It’s important though that we care about all of this in real life, not just as fiction, as Berlatsky notes:

Because fictional tyrannical dystopias are primarily envisioned as affecting white people, it can be harder to see negative policies that oppress others. At the point where the fictional metaphor matters more than the current reality, something’s gone terribly wrong.

Several critics suggest that The Handmaid’s Tale represents a failure of intersectionality. The term ‘intersectionality’ originates in African American theorising and activism, and is most commonly associated with work by Kimberle Crenshaw and Patricia Collins. It describes how systems of oppression are viewed as interlocking. Therefore, attempts to dislodge one axis of oppression will impact on another. Globally, the term intersectionality is being appropriated as a way to activate attempts to address issues of under-representation in institutions without reverting to a single focus lens on issues such as gender, race, class, or sexuality. Intersectionality provides an understanding that identities can be simultaneously privileged and marginalised, depending on social context. Consequently we are all interpellated differently by racism and sexism through a ‘matrix of domination’ (Collins, 1990).  For example, I can be a migrant woman of color who is marginalised through sexism and racism, but I am also privileged through class position, education, able body and heterosexuality. 

Intersectionality is being introduced into diversity initiatives in Universities and is gaining momentum in the Science, Technology, Engineering, Maths and Medicine disciplines (STEMM) disciplines. Intersectionality is seen as a strategy  for addressing the barriers to success and to widen and increase participation by women, working class, indigenous and ethnic minority groups, in order to leverage a diversity dividend. The use of an economic metaphor valorises innovation and economic competitiveness, rather than attempting to address a pressing social justice. Metaphors to account for inequities and the underrepresentation of groups in STEMM disciplines include the old boys club, the glass ceiling and the leaky pipeline. These metaphors also guide the strategies developed to address these failures of inclusion and their limitations. Merely creating a pipeline and applying force to propel people forward does not guarantee an increase numbers (Núñez, 2014). In the case of a pipeline, we know that it leaks at various stages and is still designed for an implicit ideal input, consequently women and ethnic minorities are more likely than white men to leak out. We also know that the leaking is progressive, so the farther along the pipeline, the fewer these groups are in number (Clark Blickenstaff*, 2005). Merely focusing on increasing or diversifying the supply hides the real issue which is at the ‘demand’ end of things, that is, the organization and the need for it to change (Riegle‐Crumb, 2009, p. 4). Similarly, the metaphor of the glass ceiling assumes the barriers facing marginalised groups are a one dimensional insurmountable barrier experienced at the ‘top’, when in fact marginalised identities experience discrimination and ‘hurdles’ throughout their careers (Husu, 2001, p. 177). Instead the analytic of intersectionality is being vaunted as an antidote to under-representation.

Diversity management is fast becoming a feature of the public image of the corporatised entrepreneurial academy. Standing in for structural or organisational change, diversity risks reproducing the issues I’ve identified in the screen version in the Handmaid’s Tale. Damon Williams suggests there are several political, social and economic imperatives for Universities to respond to diversity. In its place in the knowledge based global economy, it must respond to changing demographics and meet the need for creative and capable students and also demonstrate the viability and vibrancy of diversity. The diversity management strategies it employs range from access and equity; to creating a multicultural and inclusive campus climate; enhancing domestic and international diversity research and scholarship and preparing students for a diverse and global world (Damon Williams, p.19). However, the emphasis on diversity as a way of increasing numbers and improving Human Resources, is often not supplemented with an explicit engagement with the systems of power and inequality that structure the processes of knowledge production. Consequently, the white, elite and middle class structures and structural arrangements that reproduce inequality remain both invisible and intact (Dill & Zambrana, 2009). The neoliberal assumption of an asocial and ahistorical individualised world of meritocracy, means sometimes ignoring racism and sexism (Ong, Wright, Espinosa, & Orfield, 2011). Unmarked white, masculine values and norms instituted through colonial processes of political, cultural, and military dominance favor dominant epistemologies which claim universal truths that overlook social locations and identities (Carlone & Johnson, 2007).

The Handmaid’s Tale is being flagged as a universal wake-up call, about a white feminist dystopia. But as critics note, this ‘feminist’ rallying point ignores enduring prior calls by indigenous and women of color and is a failure of intersectionality. The assumption of a post-racial, ahistorical world limits the possibilities of imagining alternative futures for people of color, in a time of Turnbull, Trump, Macron and Trudeau. Similarly efforts in academia to engage with ‘diversity’ without attention to intersectionality and attending to systems of power and inequality, risks positioning people of color as economic resources who are mere backdrop in a white supremacist institution.

      Refs

  • Amery, F., Bates, S., Jenkins, L., & Savigny, H. (2015). Metaphors on Women in Academia: A Review of the Literature, 2004–2013. In At the Center: Feminism, Social Science and Knowledge (pp. 245–267). emeraldinsight.com.
  • Archer, L., Dawson, E., DeWitt, J., Seakins, A., & Wong, B. (2015). “Science capital”: A conceptual, methodological, and empirical argument for extending bourdieusian notions of capital beyond the arts. Journal of Research in Science Teaching, 52(7), 922–948.
  • Ball, S. J. (2015). Accounting for a sociological life: influences and experiences on the road from welfarism to neoliberalism. British Journal of Sociology of Education, 36(6), 817–831.
  • Bolden, R., Gosling, J., O’Brien, A., Peters, K., Ryan, M. K., Haslam, S. A., … Winklemann, K. (2012). Academic leadership: changing conceptions, identities and experiences in UK Higher Education. Leadership Foundation for Higher Education,.
  • Cech, E. A., Metz, A., Smith, J. L., & deVries, K. (2017). Epistemological Dominance and Social Inequality. Science, Technology & Human Values, 0162243916687037.
  • Clark Blickenstaff, J. (2005). Women and science careers: leaky pipeline or gender filter? Gender and Education, 17(4), 369–386.
  • Collins, P. H. (1990). 2000. Black Feminist Thought: Knowledge, Consciousness, and the Politics of Empowerment.
  • Carlone, H. B., & Johnson, A. (2007). Understanding the science experiences of successful women of color: Science identity as an analytic lens. Journal of Research in Science Teaching, 44(8), 1187–1218.
  • Dill, B. T., & Zambrana, R. E. (2009). Emerging Intersections: Race, Class, and Gender in Theory, Policy, and Practice. Rutgers University Press.
  • Dodson, D.J. (1997). “We lived in the blank white spaces”: Rewriting the Paradigm of Denial in Atwood’s The. Utopian Studies, 8(2), 66–86.
  • Evans, M. (2004). Killing Thinking: Death of the University. Bloomsbury Publishing.
  • Eveline, J., & Booth, M. (2004). “Don’t write about it”: Writing “the other” for the ivory basement. Journal of Organizational Change Management, 17(3), 243–255.
  • Ferguson, H., & Wheat, K. L. (2015). Early career academic mentoring using Twitter: the case of# ECRchat. Higher Education Policy and Management. Retrieved from http://www.tandfonline.com/doi/abs/10.1080/1360080X.2014.991533
  • Fitzgerald, T. (2014). Advancing knowledge in higher education: Universities in turbulent times: Hershey, PA: IGI Global.
  • Harding, S. (1989). Taking Responsibility for Our Own Gender, Race, Class: Transforming Science and the Social Studies of Science. Rethinking Marxism, 2(3), 7–19.
  • Husu, L. (2001). On metaphors on the position of women in academia and science. NORA: Nordic Journal of Women’s Studies, 9(3), 172–181.
  • Jones, S. R. (2016). Authenticity in leadership: Intersectionality of identities. New Directions for Student Leadership, Winter 2016(152), 23–34.
  • Ko, L. T., Kachchaf, R. R., Ong, M., & Hodari, A. K. (2013). Narratives of the double bind: Intersectionality in life stories of women of color in physics, astrophysics and astronomy. AIP Conference Proceedings, 1513(1), 222–225.
  • Lynch, K. (2006). Neo-Liberalism and Marketisation: The Implications for Higher Education. European Educational Research Journal, 5(1), 1–17.
  • Lynch, K., Grummell, B., & Devine, D. (2012). Crafting the Elastic Self: Gendered Experiences of Senior Management. In New Managerialism in Education (pp. 134–153). Palgrave Macmillan UK.
  • Mignolo, W. (2000). The Many Faces of Cosmo-polis: Border Thinking and Critical Cosmopolitanism. Public Culture, 12(3), 721–748.
  • Miller, R. A., & Vaccaro, A. (2016). Queer Student Leaders of Color: Leadership as Authentic, Collaborative, Culturally Competent. Journal of Student Affairs Research and Practice, 53(1), 39–50.
  • Naidoo, R. (2003). Repositioning Higher Education as a Global Commodity: Opportunities and challenges for future sociology of education work. British Journal of Sociology of Education, 24(2), 249–259.
  • Núñez, A.-M. (2014). Advancing an Intersectionality Framework in Higher Education: Power and Latino Postsecondary Opportunity. In M. B. Paulsen (Ed.), Higher Education: Handbook of Theory and Research (pp. 33–92). Springer Netherlands.
  • Ong, M., Wright, C., Espinosa, L., & Orfield, G. (2011). Inside the Double Bind: A Synthesis of Empirical Research on Undergraduate and Graduate Women of Color in Science, Technology, Engineering, and Mathematics. Harvard Educational Review, 81(2), 172–209.
  • Riegle‐Crumb, C. (2009). Removing Barriers: Women in Academic Science, Technology, Engineering, and Mathematics . Edited by Jill M. Bystydzienski and Sharon R. Bird. Bloomington: Indiana University Press, 2006. Pp. 347. 75.00 (cloth); 29.95 (paper). The American Journal of Sociology, 114(4), 1231–1233.
  • Ruderman, M. N., & Ernst, C. (2004). Finding yourself: How social identity affects leadership. Leadership in Action, 24(3), 3–7.
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  • Su, F., & Wood, M. (2017). Cosmopolitan Perspectives on Academic Leadership in Higher Education. (Camilla Erskine Tanya Fitzgerald, Ed.). Bloomsbury Publishing.
  • Williams, D. A. (2013). Strategic Diversity Leadership: Activating Change and Transformation in Higher Education. Stylus Publishing, LLC.
  • Winter, R. (2009). Academic manager or managed academic? Academic identity schisms in higher education. Journal of Higher Education Policy and Management, 31(2), 121–131.
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May 15, 2017/by ruth
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Australia, Colonialism, Cultural safety, Education, Indigenous, Inequalities, Nursing, Power relations, Racism, Writing

Protected: Supporting conversations about cultural safety: Possum skin bracelet making

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July 16, 2016/by ruth
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Australia, Cultural safety, Education, Forum theatre, Inequalities, Power relations, Professional development, Racism, Writing

Using forum theatre to facilitate reflection and culturally safe practice in nursing

Unpublished manuscript for those who might be interested. Cite as: DeSouza, R. (2016, July 16). Using forum theatre to facilitate reflection and culturally safe practice in nursing [Web log post]. Retrieved from: http://ruthdesouza.dreamhosters.com/2016/07/16/using-forum-theatre-for-reflective-practice/

High quality communication is central to nursing practice and to nurse education. The quality of interaction between service users/patients and inter-professional teams has a profound impact on perception of quality of care and positive outcomes. Creating spaces where reflective practice is encouraged allows students to be curious, experiment safely, make mistakes and try new ways of doing things. Donald Schon (1987) likens the world of professional practice to terrain made up of high hard ground overlooking a swamp. Applying this metaphor in Nursing, Street (1991) contends that some clinical problems can be resolved through theory and technique (on hard ground), while messy, confusing problems in swampy ground don’t have simple solutions but their resolution is critical to practice.

Rocks Philip Island

Rocks Philip Island

Australian society has an Indigenous foundation and is becoming increasingly multicultural.In Victoria 26.2 percent of Victorians and 24.6 per cent of Australians were born overseas, compared with New Zealand (22.4 per cent), Canada (21.3 per cent), United States (13.5 per cent) and The United Kingdom (10.4 per cent). Australia’s multicultural policy allows those who call Australia home the right to practice and share in their cultural traditions and languages within the law and free from discrimination (Australia Government, 2011, p. 5). Yet, research highlights disparities in the provision of health care to Culturally and Linguistically Diverse (CALD) groups and health services are not always able to ensure the delivery of culturally safe practice within their organisations (Johnstone & Kanitsaki, 2008).

An important aspect of cultural safety is the recognition that the health care system has its own culture. In Australia, this culture is premised on a western scientific worldview. Registered nurses (RNs) have a responsibility to provide culturally responsive health care that is high quality, safe, equitable and meets the standards expected of the profession such as taking on a leadership role, being advocates and engaging in lifelong learning. RNs who practice with cultural responsiveness are able to ‘respond to the healthcare issues of diverse communities’ (Victorian Department of Health [DoH], 2009, p. 4), and are respectful of the health beliefs and practices, values, culture and linguistic needs of the individual, populations and communities (DoH, 2009, p. 12).

Culturally competent nursing requires practitioners to provide individualised care and consider their own values and beliefs impact on care provision. Critical reflection can assist nurses to work in the swampy ground of linguistic and cultural diversity. Reflection involves learning from experience: not simply thinking back over an event, but developing a conscious and systematic practice of thinking about experience in order to learn and change future behaviour. Critical reflection involves challenging the nurse’s understanding of themselves, their attitudes and behaviours in order to bring their views of practice and the world closer to the complex reality of care. This kind of process facilitates clinical reasoning, which is the thinking and decision-making toward undertaking the best-judged action, enhancing client care and improve practitioner capability and resilience.

Didactic approaches impart knowledge and provide students with declarative knowledge but don’t always provide the opportunity to practice communication techniques or to explore in depth the attitudes and behaviours that influence their own knowledge. Drama and theatre are increasingly being used to create dynamic simulated learning environments where students can try out different communication techniques in a safe setting where there are multiple ways of communicating. A problem based learning focus allows students to reflect on their own experiences and to arrive at their own solutions, promoting deep learning as students use their own experiences and knowledge to problem solve.

In 2015 I developed and trialed a unit for students at all three Monash School of Nursing and Midwifery campuses in their third year. The aim of the unit was to provide students with resources to understand their own culture, the culture of healthcare and the historical and social issues that contribute to differential health outcomes for particular groups in order to discern how to contribute to providing culturally safe care for all Australians. The unit examined how social determinants of health such as class, gender, race, sexual orientation, gender identity; education, economic status and culture affect health and illness. Students were invited to consider how politics, economics, the social-cultural environment and other contextual factors impacted on Aboriginal and Torres Strait Islander and Culturally and Linguistically Diverse (CALD) communities. Students were asked to consider how policy, the planning, organisation and delivery of health and healthcare shaped health care delivery.

The unit was primarily delivered online but a special workshop was offered using Forum theatre developed by Augusto Boal in partnership with two experienced practitioners Azja Kulpińska and Tania Cañas. Forum theatre is focused on promoting dialogue between actors and audience members, it promotes transformation for social justice in the broader world and differs from traditional theatre which involves monologue. Simulated practices like Forum theatre allow students to address topics from practice within an educational setting, where they can safely develop self-awareness and knowledge to make sense of the difficult personal and professional issues encountered in complex health care environments. This is particularly important when it comes to inter-cultural issues and power relations. Such experiential techniques can help students to gain emotional competence, which in turn assists them to communicate effectively in a range of situations.

Students were invited to identify a professional situation relating to culture and health that was challenging and asked to critically reflect on the event/incident focusing on the concerns they encountered in relation to the care of the person. Through the forum theatre process they were asked to consider alternative understandings of the incident, and critically evaluate the implications of these understandings for how more effective nursing care could have been provided. Through the workshop it was hoped that students could then review the experience in depth and undertake a process of critical reflection in a written assessment by reconstructing the experience beyond the personal. They were encouraged to examine the historical and social factors that structure a situation and to start to theorise the causes and consequences of their actions. They were encouraged to use references such as research, policy documents or theory to support their analysis and identify an overarching issue, or key aspect of the experience that affected it profoundly. Concluding with the key learnings through the reflective process, the main factors affecting the situation, and how the incident/event could have been more culturally safe/competent. Students were asked to develop an action plan to map alternative approaches should this or a similar situation arise in the future.

Forum theatre has been used in nursing and health education to facilitate deeper and more critical reflective thinking, stimulate discussion and exploratory debate among student groups. It is used to facilitate high quality communication skills, critical reflective practice, emotional intelligence and empathy and appeals to a range of learning styles. Being able to engage in interactive workshops allows students to engage in complex issues increasing self-awareness using techniques include physical exercises and improvisations.

My grateful thanks to two Forum Theatre practitioners who led this work with me:

Azja Kulpińska is a community cultural development worker, educator and Theatre of the Oppressed practitioner and has delivered workshops both in Australia and internationally. She has been a supporter of RISE: Refugees, Survivors and Ex-Detainees and for the last 3 years has been co-facilitating a Forum Theatre project – a collaboration between RISE and Melbourne Polytechnic that explores challenging narratives around migration, settlement and systems of oppression. She is also a youth worker facilitating a support group for young queer people in rural areas.

Tania Cañas is a Melbourne-based arts professional with experience in performance, facilitation, cultural development and research. Tania is a PhD candidate at the Centre for Cultural Partnerships, VCA. She also sits on the International PTO Academic Journal.
She has presented at conferences both nationally and internationally, as well as facilitated Theatre of the Oppressed workshops at universities, within prisons and youth groups-in in Australian, Northern Ireland, The Solomon Islands, The United States and most recently South Africa. For the last 2.5 years has been working with RISE and Melbourne Polytechnic to develop a Forum Theatre program with students who are recent migrants, refugees and asylum seekers.

References

  • Australian Government. (2011). The People of Australia: Australia’s Multicultural Policy, Retrieved from https://www.dss.gov.au/sites/default/files/documents/12_2013/people-of-australia-multicultural-policy-booklet.pdf
  • Boud, D., Keogh, R. and Walker, D. 1985. Reflection: Turning experience into learning. London: Kogan Page.
  • Gibbs, G. 1988. Learning by doing: A guide to teaching and learning methods. Oxford: Oxford Further Education Unit.
  • Johns, C. 1998b. Illuminating the transformative potential of guided reflection. In Transforming Nursing Through Reflective Practice (eds). C. Johns and D. Freshwater. Oxford: Blackwell Science. 78-90.
  • Johnstone, MJ. & Kanitsaki, O. (2008). The politics of resistance to workplace cultural diversity education for health service providers: an Australian study. Race Ethnicity and Education 11(2) 133-134
  • McClimens, A., & Scott, R. (2007). Lights, camera, education! The potentials of forum theatre in a learning disability nursing program. Nurse Education Today, 27(3), 203-9. doi:10.1016/j.nedt.2006.04.009
  • Middlewick, Y., Kettle, T. J., & Wilson, J. J. (2012). Curtains up! Using forum theatre to rehearse the art of communication in healthcare education. Nurse Education in Practice, 12(3), 139-42. doi:10.1016/j.nepr.2011.10.010
  • Nursing and Midwifery Board of Australia (2006). National competency standards for the registered nurse, viewed 16 February 2014: www.nursingmidwiferyboard.gov.au.
  • Nursing and Midwifery Board of Australia (2008). Code of professional conduct for nurses in Australia, Nursing and Midwifery Board of Australia, Canberra.
  • Schön, D.A. 1987. Educating the Reflective Practitioner. San Francisco: Jossey Bass.
  • Street, A. 1990. Nursing Practice: High Hard Ground, Messy Swamps, and the Pathways in Between. Geelong: Deakin University Press.
  • Turner, L. (2005). From the local to the global: bioethics and the concept of culture. Journal of Medicine and Philosopy. 30:305-320 DOI: 10.1080/03605310590960193
  • Victorian Department of Health. (2009). Cultural responsiveness framework Guidelines for Victorian health services, Retrieved from http://www.health.vic.gov.au/__data/assets/pdf_file/0008/381068/cultural_responsiveness.pdf
  • Wasylko, Y., & Stickley, T. (2003). Theatre and pedagogy: Using drama in mental health nurse education. Nurse Education Today, 23(6), 443-448. doi:10.1016/s0260-6917(03)00046-7
  • Also see DeSouza, R (2015). Communication central to Nursing Practice. Transforming the Nations Healthcare 2015, Australia’s Healthcare News.
July 16, 2016/by ruth
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Cultural safety, Inequalities, Maternity, Migration, Multiculturalism, Nursing, Power relations, Racism, Refugees, Women, Writing

Providing Culturally Safe Maternal and Child Healthcare

Cite as: DeSouza, R. (2016, June 1st). Keynote address-Providing Culturally Safe Maternal and Child Healthcare, Multicultural Health Research to Practice Forum: Early Interventions in Maternal and Child Health, Program, Organised by the Multicultural Health Service, South Eastern Sydney, Local Health District, Australia. Retrieved fromhttp://ruthdesouza.dreamhosters.com/2016/06/11/cultural-safety-in-maternity/

 

Image from the film, the Namesake

Image from the film, the Namesake

A paragraph haunts me in The Namesake, Jhumpa Lahiri’s fictional account of the Indian immigrant experience. Ashoke and Ashima Ganguli migrate from Calcutta to Cambridge, Massachusetts after their arranged wedding. While pregnant, Ashima reflects:

Nothing feels normal. it’s not so much the pain which she knows she will survive. It’s the consequence: motherhood in a foreign land. For it was one thing to be pregnant to suffer the queasy mornings in bed, the sleepless nights, the dull throbbing in her back, the countless visits to the bathroom. Throughout the experience, in spite of her growing discomfort, she’s been astonished by her body’s ability to make life, exactly as her and grandmother and all her great grandmothers had done. That it was happening so far from home, unmonitored and unobserved by those she loved, had made it more miraculous still. But she is terrified to raise a child in a country where she is related to no one, where she knows so little, where life seems so tentative and spare. The Namesake, Jhumpa Lahiri

Ashima’s account beautifully captures the universality of the physical, embodied changes of maternity, the swelling, the nausea and other changes. But what Lahiri poignantly conveys is the singular emotional and cultural upheaval of these changes, the losses they give rise to. The absence of loving, knowledgeable, nurturing witnesses, the absence of a soft place to fall.

Arrival of baby girl in Prato, Tuscany. Credit DeSouza (2006).

Arrival of baby girl in Prato, Tuscany. Credit DeSouza (2006).

In 1994 I worked on a post-natal ward where I was struck by the limits of universality and how treating everybody the same was problematic. For example, ostensibly beneficial practices like the routine administration of an icepack for soothing the perineum postnatally, or the imperative to mobilise quickly or to “room in” have potentially damaging effects on women whose knowledge frameworks differed from the dominant Pakeha culture of healthcare. These practices combined with a system designed for an imagined white middle class user, where professionals had knowledge deficits and monocultural and assimilatory attitudes, led to unsafe practices such as using family members and children as interpreters (my horror when a boy child was asked to ask his mother about the amount of lochia on her pad). The sanctity of birth, requiring the special, nurturing treatment of new mothers and a welcome from a community was superseded by the factory culture of maximum efficiency. Not all mothers were created equal, not young mothers, not older mothers, not single mothers, not substance using mothers, not indigenous mothers, not culturally different mothers. The sense that I was a cog in a big machine that was inattentive to the needs of “other” mothers led me to critique the effectiveness of cultural safety in the curriculum. How was it possible that a powerful indigenous pedagogical tool for addressing health inequity was not evident in clinical practice?

Photo of me as a staff nurse back in the day.

Photo of me as a staff nurse back in the day.

Leaving the post-natal ward, I took up a role helping to develop a new maternal mental health service in Auckland. There too I began to question the limitations of our model of care which privileged talking therapies rather than providing practical help and support. I was also staggered at the time at the raced and classed profile of our clients who were predominantly white middle class career women. Interestingly, the longer I was involved in the service the greater the number of ethnic women accessed the service. For my Master’s thesis, I interviewed Goan women about their maternity experiences in New Zealand, where the importance of social support and rituals in the perinatal period was noted by participants.

As much as it was important to register and legitimate cultural difference, I was also aware of the importance of not falling into the cultural awareness chasm. As Gregory Philips notes in his stunning PhD, it was assumed that through teaching about other cultures, needs would be better understood as “complex, equal and valid” (Philips, 2015). However, it didn’t challenge privilege, class and power. As Joan Scott points out:

There is nothing wrong, on the face of it, with teaching individuals about how to behave decently in relation to others and about how to empathize with each other’s pain. The problem is that difficult analyses of how history and social standing, privilege, and subordination are involved in personal behavior entirely drop out (Scott, 1992, p.9).

The problem with culturalism is that the notion of “learning about” groups of people with a common ethnicity assumes that groups of people are homogenous, unchanging and can be known. Their cultural differences are then viewed as the problem, juxtaposed against an implicit dominant white middle class cultural norm. This became evident in my PhD analysis of interviews with Korean mothers who’d birthed in New Zealand. In Australia and the US, cultural competence has superseded cultural awareness as a mechanism for correcting the limitations of universalism, by drawing attention to organisational and systemic mechanisms that can be measured but as a strategy for individual and interpersonal action, several authors draw attention to competence as being part of the “problem”:

The concept of multicultural competence is flawed… I question the notion that one could become “competent” at the culture of another. I would instead propose a model in which maintaining an awareness of one’s lack of competence is the goal rather than the establishment of competence. With “lack of competence” as the focus, a different view of practicing across cultures emerges. The client is the “expert” and the clinician is in a position of seeking knowledge and trying to understand what life is like for the client. There is no thought of competence—instead one thinks of gaining understanding (always partial) of a phenomenon that is evolving and changing (Dean, 2001, p.624).

In Wellness for all: the possibilities of cultural safety and cultural competence in New Zealand, I advocated for a combination of cultural competence and cultural safety. Cultural safety was developed by Indigenous nurses in Aotearoa New Zealand as a mechanism for considering and equalizing power relationships between client and practitioner. It is an ethical framework for practice derived from postcolonial and critical theory. Cultural safety proposes that practitioners reflect on how their status as culture bearers impacts on care, with care being deemed culturally safe by the consumer or recipient of care. In my PhD I wrote about the inadequacy of the liberal foundations of nursing and midwifery discourses for meeting the health needs of diverse maternal groups. My thesis advocated for the extension of the theory and practice of cultural safety to critique nursing’s Anglo-European knowledge base in order to extend the discipline’s intellectual and political mandate with the aim of providing effective support to diverse groups of mothers. In Australia, cultural responsiveness, cultural security and cultural respect are also used, you can read more about this on my post on Minding the Gap.

So let’s look at culturally safe maternity care. My experience as a clinician and researcher reveal a gap between how birth is viewed. In contemporary settler nations like New Zealand, midwifery discourses position birth as natural and the maternal subject as physically capable of caring for her baby from the moment it is born, requiring minimal intervention and protection. The maternal body is represented as strong and capable for taking on the tasks of motherhood. In contrast, many cultures view birth as a process that makes the body vulnerable, requiring careful surveillance and monitoring and a period of rest and nurturing before the new mother can take on new or additional responsibilities. The maternal body is seen as a body at risk (Mahjouri, 2008), and vulnerable requiring special care through rituals and support. Therefore, practices based on a dominant discourse of birth as a normal physiological event and neoliberal discourses of productive subjectivity create a gap between what migrant  women expect in the care they expect from maternal services. These practices also constitute modes of governing which are intended to be empowering and normalizing, but are experienced  as disempowering because they don’t take into account other views of birth. Consequently there is no recognition on the part of maternity services that for a short time, there is a temporary role change, where the new mother transitions into a caregiver by being cared for. This social transition where the mother is mothered is sanctioned in order to safeguard the new mother, a demonstration to value and protect both future capacity for mothering and long term well being, in contrast with dominant discourses of responsibilisation and intensive motherhood. Thus, instead of a few days of celebration or a baby shower, extended post-partum practices are enacted which can include the following (Note that these will vary depending on in group differences, urbanisation, working mothers, migration):

  • Organised support- where family members (eg mother, mother-in-law, and other female relatives) care for the new mother and infant. Other women may also be involved eg birth attendants.
  • Rest period and restricted practices- where women have a prescribed rest periods of between 21 days and five weeks, sometimes called “Doing the month”. Activities including sexual activity, physical and intellectual work are reduced.
  • Diet- Special foods are prepared that promote healing/restore health or have a rebalancing function for example because the postpartum period is seen as a time when the body is cold, hot food (protein rich) chicken soup, ginger and seaweed, milk, ghee, nuts, jaggery might be consumed. Special soups and tonics with a cleansing or activating function are consumed eg to help the body expel lochia, to increase breastmilk. These foods might be consumed at different stages of the perinatal period and some food might be prohibited while breastfeeding.
  • Hygiene and warmth- particular practices might be adhered to including purification/bathing practices eg warm baths, immersion. Others might include not washing hair.
  • Infant care and breastfeeding- Diverse beliefs about colostrum, other members of family may take more responsibility while mother recovers and has a temporarily peripheral role. Breastfeeding instigation and duration may differ.
  • Other practices include: binding, infant massage, maternal massage, care of the placenta.

If women are confronted with an unfamiliar health system with little support and understanding, they can experience stress, insecurity, loneliness, isolation, powerlessness, hopelessness. This combined with communication gaps and isolation, poor information provision, different norms, feeling misunderstood and feeling stigmatized. What could be a special time is perceived as a lack of care. Fortunately in Australia there are some excellent resources, for example this research based chapter on Cultural dimensions of pregnancy, birth and post-natal care produced by Victoria Team, Katie Vasey and Lenore Manderson, proposes useful questions for perinatal assessment which I have summarised below:

  • Are you comfortable with both male and female health care providers?
  • Are there any cultural practices that we need to be aware of in caring for you during your pregnancy, giving birth and postnatal period? – For example, requirements with the placenta, female circumcision or infant feeding method.
  • In your culture, do fathers usually attend births? Does your partner want to attend the birth of his child? If not, is there another close family member you would like to be present? Would you like us to speak to them about your care?
  • Are there any foods that are appropriate or inappropriate for you according to your religion or customs during pregnancy, birth and the postpartum period?
  • Are there any beliefs or customs prohibiting physical activity during pregnancy, birth and the postpartum period? Do you plan to observe these? – For example, a confinement period.
  • What is the culturally acceptable way for you to express pain during childbirth? – For example, screaming or trying to keep silent.
  • Are there any precautions with infant care?
  • How many visitors do you expect while you are in the hospital?
  • Do you have anyone in your family or community who can help you in practical ways when you get home?

Negotiating between cultural practices, values and norms, religious beliefs and views, beliefs about perinatal care is a starting point. It is also important to consider language proficiency, health literacy, quality of written materials, and level of acculturation. For further information on health literacy see the Centre for Culture, Ethnicity & Health (CEH) resources including: What is health literacy?, Social determinants of health and health literacy.  Using professional interpreters improves communication, clinical outcomes, patient satisfaction and quality of care, and reduces medical testing, errors, costs and risk of hospitalisation. Lack of appropriate interpreter service use is associated with adverse health outcomes. Centre for Culture,Ethnicity & Health (CEH) has excellent resources in this regard: Interpreters: an introduction, Assessing the need for an interpreter, Booking and briefing an interpreter, Communicating via an interpreter, Debriefing with an interpreter, Developing a comprehensive language services response, Language services guide Managing bilingual staff, Planning for translation, Recruiting bilingual staff.

Assessment should also consider:

  • Genetics and pregnancy: women’s age, parity, planning and acceptance of pregnancy, pregnancy related health behaviour and perceived health during pregnancy. 
  • Migration: women’s knowledge of/familiarity with the prenatal care services/system, experiences and expectations with prenatal care use in their country of origin, pregnancy status on arrival in the new industrialized western country.
  • Culture: women’s cultural practices, values and norms, acculturation, religious beliefs and views, language proficiency, beliefs about pregnancy and prenatal care.
  • Position in the host country: women’s education level, women’s pregnancy-related knowledge, household arrangement, financial resources and income.
  • Social network: size and degree of contact with social network, information and support from social network.
  • Accessibility: transport, opening hours, booking appointments, direct and indirect discrimination by the prenatal care providers.
  • Expertise: prenatal care tailored to patients’ needs and preferences.
  • Treatment and communication: communication from prenatal care providers to women, personal treatment of women by prenatal care providers, availability of health promotion/information material, use of alternative means of communication.
  • Professionally defined need: referral by general practitioners and other healthcare providers to prenatal care providers

A review by Small, Roth et al., (2014) found that what immigrant and non-immigrant women want from maternity care is similar: safe, high quality, attentive and individualised care, with adequate information and support. Generally immigrant women were less positive about care than non-immigrant women, in part due to communication issues, lack of familiarity with care systems, perceptions of discriminatory care which was not kind or respectful. The challenge for health systems is to address the barriers immigrant women face by improving communication, increasing women’s understanding of care provision and reducing discrimination. Clinical skills including—introspection, self-awareness, respectful questioning, attentive listening, curiosity, interest, and caring.

Also:

  • Facilitating trust, control
  • Delivering quality, safe care, communicating, being caring, providing choices
  • Facilitating access to interpreters and choice of gender of care provider,
  • Considering cultural practices, preferences and needs/different expectations for care
  • Engendering positive interactions, being empathetic, kind, caring and supportive.
  • Taking concerns seriously
  • Preserving dignity and privacy
  • Seeing a person both as an individual, a family member and a community member
  • Developing composure managing verbal and non-verbal expressions of disgust and surprise
  • Paradoxical combination of two ideas— being “informed” and “not knowing” simultaneously.

In that sense, our knowledge is always partial and we are always operating from a position of incompletion or lack of competence. Our goal is not so much to achieve competence but to participate in the ongoing processes of seeking understanding and building relationships. This understanding needs to be directed toward ourselves and not just our clients. As we question ourselves we gradually wear away our own resistance and bias. It is not that we need to agree with our clients’ practices and beliefs; we need to understand them and under-stand the contexts and history in which they develop (Dean, 2001, p.628).

Conclusion

In this presentation I have invited you to examine your own values and beliefs about the perinatal period and how they might impact on the care you might provide. I have asked you to consider both the similarities and differences between how women from culturally diverse communities experience maternity and those from the dominant culture. Together, we have scrutinised a range of strategies for enhancing trust, engagement and perinatal outcomes for all women. Drawing on my own clinical practice and research, I have asked you to consider an alternative conceptualisation of the maternal body when caring for some women, that is the maternal body as vulnerable, which requires a period of rest and nurturing. This framing requires a temporary role change for the new mother to transition into being a caregiver, by being cared for, so that her future capacity for mothering and long term well being are enhanced. I have asked you to reflect on how supposedly empowering practices can be experienced as disempowering because they don’t take into account this view of birth. In the context of differing conceptualisations of birth and the maternal body I have drawn special attention to: negotiating between health beliefs; having cultural humility; considering ways in which your own knowledge is always partial; and recommended a range of resources that can be utilised to ensure positive outcomes for women and their families. As health services in Australia grapple with changing societal demographics including cultural diversity, changing consumer demands and expectations; resource constraints; the limitations in traditional health care delivery; greater emphasis on transparency, accountability, evidence- based practice (EBP) and clinical governance (Davidson et al., 2006), questions of how to provide effective universal health care can be enhanced by considering how differing views can be incorporated as they hold potential benefits for all.

Selected references

  • Boerleider, A. W., Wiegers, T. A., Manniën, J., Francke, A. L., & Devillé, W. L. (2013). Factors affecting the use of prenatal care by non-western women in industrialized western countries: A systematic review. BMC Pregnancy and Childbirth, 13(1), 8.
  • Dennis, C. L., Fung, K., Grigoriadis, S., Robinson, G. E., Romans, S., & Ross, L. (2007). Traditional postpartum practices and rituals: A qualitative systematic review. Women’s Health (London, England), 3(4), 487-502. doi:10.2217/17455057.3.4.487.
  • Mander, S., & Miller, Y. D. (2016). Perceived safety, quality and cultural competency of maternity care for culturally and linguistically diverse women in queensland. Journal of Racial and Ethnic Health Disparities, 3(1), 83-98. doi:10.1007/s40615-015-0118.
  • Small, R., Roth, C., Raval, M., Shafiei, T., Korfker, D., Heaman, M. Gagnon, A. (2014). Immigrant and non-immigrant women’s experiences of maternity care: A systematic and comparative review of studies in five countries. BMC Pregnancy and Childbirth, 14(1).

Additional web resources

  • The Victorian Refugee Health Network has maternity resources.
  • Opportunities to improve maternal health literacy through antenatal education: an exploratory study, article by Susan Renkert and Don Nutbeam
June 11, 2016/by ruth
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Aotearoa New Zealand, Arts, Australia, Colonialism, Cultural safety, Feminism, Indigenous, Inequalities, Multiculturalism, Power relations, Racism, Writing

What is privilege and cultural appropriation? and why is it so difficult to talk about?

On 15 February 2016, I spoke on 612 ABC Brisbane Afternoons with Kelly Higgins-Devine about cultural appropriation and privilege. Our discussion was followed by discussion with guests: Andie Fox – a feminist and writer; Carol Vale a Dunghutti woman; and Indigenous artist, Tony Albert. I’ve used the questions asked during the interview as a base for this blog with thanks to Amanda Dell (producer).

Why has it taken so long for the debate to escape academia to be something we see in the opinion pages of publications now?

Social media and online activism have catapulted questions about identities and politics into our screen lives. Where television allowed us to switch the channel, or the topic skilfully changed at awkward moments in work or family conversations, our devices hold us captive. Simply scrolling through our social media feeds can encourage, enrage or mobilise us into fury or despair. Whether we like it or not, as users of social media we are being interpolated into the complex terrain of identity politics. Merely sharing a link on your social media feed locates you and your politics, in ways that you might never reveal in real time social conversations. ‘Sharing’ can have wide ranging consequences, a casual tweet before a flight resulted in Justine Sacco moving from witty interlocutor to pariah in a matter of hours. The merging of ‘private’ and public lives never being more evident.

How long has the term privilege been around?

The concept of privilege originally developed in relation to analyses of race and gender but has expanded to include social class, ability level, sexuality and other aspects of identity. Interestingly, Jon Greenberg points out that although people of color have fought racism since its inception, the best known White Privilege educators are white (Peggy McIntosh, Tim Wise and Robin DiAngelo). McIntosh’s 1988 paper White Privilege and Male Privilege: A Personal Account of Coming to See Correspondences through Work in Women’s Studies extended a feminist analysis of patriarchal oppression of women to that of people of color in the United States. This was later shortened into the essay White Privilege: Unpacking the Invisible Knapsack (pdf), which has been used extensively in a a range of settings because of it’s helpful list format .

Many people have really strong reactions to these concepts – why is that?

Robin DiAngelo, professor of multicultural education and author of What Does it Mean to Be White? Developing White Racial Literacy developed the term ‘white fragility’ to identify:

a state in which even a minimum amount of racial stress becomes intolerable, triggering a range of defensive moves. These moves include outward display of emotions such as anger, fear and guilt, and behaviors such as argumentation, silence and leaving the stress-inducing situation

DiAngelo suggests that for white people, racism or oppression are viewed as something that bad or immoral people do. The racist is the person who is verbally abusive toward people of color on public transport, or a former racist state like apartheid South Africa. If you see yourself as a ‘good’ person then it is painful to be ‘called out’, and see yourself as a bad person. Iris Marion Young’s work useful. She conceptualises oppression in the Foucauldian sense as:

the disadvantage and injustice some people suffer not because of a tyrannical power coerces them but because of the everyday practices of a well-intentioned liberal society…

Young points out the actions of many people going about their daily lives contribute to the maintenance and reproduction of oppression, even as few would view themselves as agents of oppression. We cannot avoid oppression, as it is structural and woven throughout the system, rather than reflecting a few people’s choices or policies. Its causes are embedded in the unquestioned norms, habits, symbols and assumptions underlying institutional rules and the collective consequences of following those rules (Young, 1990). Seeing oppression as the practices of a well intentioned liberal society removes the focus from individual acts that might repress the actions of others to acknowledging that “powerful norms and hierarchies of both privilege and injustice are built into our everyday practices” (Henderson & Waterstone, 2008, p.52). These hierarchies call for structural rather than individual remedies.

We probably need to start with privilege – what does that term mean?

McIntosh identified how she had obtained unearned privileges in society just by being White and defined white privilege as:

an invisible package of unearned assets which I can count on cashing in each day, but about which I am meant to remain oblivious (p. 1).

Her essay prompted understanding of how one’s success is largely attributable to one’s arbitrarily assigned social location in society, rather than the outcome of individual effort.

“I got myself where I am today. Honestly, it’s not that hard. I think some people are just afraid of a little hard work and standing on their own two feet, on a seashell, on a dolphin, on a nymph-queen that are all holding them up.”

“I got myself where I am today. Honestly, it’s not that hard. I think some people are just afraid of a little hard work and standing on their own two feet, on a seashell, on a dolphin, on a nymph-queen that are all holding them up.”

From: The Birth of Venus: Pulling Yourself Out Of The Sea By Your Own Bootstraps by Mallory Ortberg 

McIntosh suggested that white people benefit from historical and contemporary forms of racism (the inequitable distribution and exercise of power among ethnic groups) and that these discriminate or disadvantage people of color.

How does privilege relate to racism, sexism? Are they the same thing?

It’s useful to view the ‘isms’ in the context of institutional power, a point illustrated by Sian Ferguson:

In a patriarchal society, women do not have institutional power (at least, not based on their gender). In a white supremacist society, people of color don’t have race-based institutional power.

Australian race scholars Paradies and Williams (2008) note that:

The phenomenon of oppression is also intrinsically linked to that of privilege. In addition to disadvantaging minority racial groups in society, racism also results in groups (such as Whites) being privileged and accruing social power. (6)

Consequently, health and social disparities evident in white settler societies such as New Zealand and Australia (also this post about Closing the gap) are individualised or culturalised rather than contextualised historically or socio-economically. Without context  white people are socialized to remain oblivious to their unearned advantages and view them as earned through merit. Increasingly the term privilege is being used outside of social justice settings to the arts. In a critique of the Hottest 100 list in Australia Erin Riley points out that the dominance of straight, white male voices which crowds out women, Indigenous Australians, immigrants and people of diverse sexual and gender identities. These groups are marginalised and the centrality of white men maintained, reducing the opportunity for empathy towards people with other experiences.

Do we all have some sort of privilege?

Yes, depending on the context. The concept of intersectionality by Kimberlé Crenshaw is useful, it suggests that people can be privileged in some ways and not others. For example as a migrant and a woman of color I experience certain disadvantages but as a middle class cis-gendered, able-bodied woman with a PhD and without an accent (only a Kiwi one which is indulged) I experience other advantages that ease my passage through the world You can read more in the essay Explaining White Privilege to a Broke White Person.

How does an awareness of privilege change the way a society works?

Dogs and Lizards: A Parable of Privilege by Sindelókë is a helpful way of trying to understand how easy it is not to see your own privilege and be blind to others’ disadvantages. You might have also seen or heard the phrase ‘check your privilege’ which is a way of asking someone to think about their own privilege and how they might monitor it in a social setting. Exposing color blindness and challenging the assumption of race-neutrality is one mechanism for addressing the issue of privilege and its obverse oppression.  Increasingly in health and social care, emphasis is being placed on critiquing how our own positions contribute to inequality (see my chapter on cultural safety), and developing ethical and moral commitments to addressing racism so that equality and justice can be made possible. As Christine Emba notes “There’s no way to level the playing field unless we first can all see how uneven it is.” One of the ways this can be done is through experiencing exercises like the Privilege Walk which you can watch on video. Jenn Sutherland-Miller in Medium reflects on her experience of it and proposes that:

Instead of privilege being the thing that gives me a leg up, it becomes the thing I use to give others a leg up. Privilege becomes a way create equality and inclusion, to right old wrongs, to demand justice on a daily basis and to create the dialogue that will grow our society forward.

Is privilege something we can change?

If we move beyond guilt and paralysis we can use our privilege to build solidarity and challenge oppression.  Audra Williams points out that a genuine display of solidarity can require making a personal sacrifice. Citing the example of Aziz Ansari’s Master of None, where in challenging the director of a commercial about the lack of women with speaking roles, he ends up not being in the commercial at all when it is re-written with speaking roles for women. Ultimately privilege does not gets undone through “confession” but through collective work to dismantle oppressive systems as Andrea Smith writes.

Cultural appropriation is a different concept, but an understanding of privilege is important, what is cultural appropriation?

Cultural appropriation is when somebody adopts aspects of a culture that is not their own (Nadra Kareem Little). Usually it is a charge levelled at people from the dominant culture to signal power dynamic, where elements have been taken from a culture of people who have been systematically oppressed by the dominant group. Most critics of the concept are white (see white fragility). Kimberly Chabot Davis proposes that white co-optation or cultural consumption and commodification, can be cross-cultural encounters that can foster empathy and lead to working against privilege among white people. However, an Australian example of bringing diverse people together through appropriation backfired, when the term walkabout was used for a psychedelic dance party. Using a deeply significant word for initiation rites, for a dance party was seen as disrespectful. The bewildered organiser was accused via social media of cultural appropriation and changed the name to Lets Go Walkaround. So, I think that it is always important to ask permission and talk to people from that culture first rather than assuming it is okay to use.

What is the line between cultural appropriation and cultural appreciation?

Maisha Z. Johnson cultural appreciation  or exchange  where mutual sharing is involved.

Can someone from a less privileged culture appropriate from the more privileged culture?

No, marginalized people often have to adopt elements of the dominant culture in order to survive conditions that make life more of a struggle if they don’t.

Does an object or symbol have to have some religious or special cultural significance to be appropriated? 

Appropriation is harmful for a number of reasons including making things ‘cool’ for White people that would be denigrated in People of Color. For example Fatima Farha observes that when Hindu women in the United States wear the bindi, they are often made fun of, or seen as traditional or backward but when someone from the dominant culture wears such items they are called exotic and beautiful. The critique of appropriation extends from clothing to events Nadya Agrawal critiques The Color Run™ where you can:

run with your friends, come together as a community, get showered in colored powder and not have to deal with all that annoying culture that would come if you went to a Holi celebration. There are no prayers for spring or messages of rejuvenation before these runs. You won’t have to drink chai or try Indian food afterward. There is absolutely no way you’ll have to even think about the ancient traditions and culture this brand new craze is derived from. Come uncultured, leave uncultured, that’s the Color Run, promise.

The race ends with something called a “Color Festival” but does not acknowledge Holi. This white-washing (pun intended) eradicates everything Indian from the run including  Holi, Krishna and spring. In essence as Ijeoma Oluo points out cultural appropriation is a symptom, not the cause, of an oppressive and exploitative world order which involves stealing the work of those less privileged. Really valuing people involves valuing their culture and taking the time to acknowledge its historical and social context. Valuing isn’t just appreciation but also considering whether the appropriation of intellectual property results in economic benefits for the people who created it. Kareem Abdul-Jabbar suggests that it is often one way:

One very legitimate point is economic. In general, when blacks create something that is later adopted by white culture, white people tend to make a lot more money from it… It feels an awful lot like slavery to have others profit from your efforts.

 

Loving burritos doesn’t make someone less racist against Latinos. Lusting after Bo Derek in 10 doesn’t make anyone appreciate black culture more… Appreciating an individual item from a culture doesn’t translate into accepting the whole people. While high-priced cornrows on a white celebrity on the red carper at the Oscars is chic, those same cornrows on the little black girl in Watts, Los Angeles, are a symbol of her ghetto lifestyle. A white person looking black gets a fashion spread in a glossy magazine; a black person wearing the same thing gets pulled over by the police. One can understand the frustration.

The appropriative process is also selective, as Greg Tate observes in Everything but the burden, where African American cultural properties including music, food, fashion, hairstyles, dances are sold as American to the rest of the world but with the black presence erased from it. The only thing not stolen is the burden of the denial of human rights and economic opportunity. Appropriation can be ambivalent, as seen in the desire to simultaneously possess and erase black culture. However, in the case of the appropriation of the indigenous in the United States, Andrea Smith declares (somewhat ironically), that the desire to be “Indian” often precludes struggles against genocide, or demands for treaty rights. It does not require being accountable to Indian communities, who might demand an end to the appropriation of spiritual practices.

Go West – Black: Random Coachella attendee, 2014. Red: Bison skull pile, South Dakota, 1870’s.

Go West – Black: Random Coachella attendee, 2014. Red: Bison skull pile, South Dakota, 1870’s by Roger Peet.

Some people believe the cuisines of other cultures have been appropriated – is this an extreme example, or is it something we should consider?

The world of food can be such a potent site of transformation for social justice. I am a committed foodie (“somebody with a strong interest in learning about and eating good food who is not directly employed in the food industry” (Johnston and Baumann, 2010: 61). I am also interested in the politics of food. I live in Melbourne, where food culture has been made vibrant by the waves of migrants who have put pressure on public institutions, to expand and diversify their gastronomic offerings for a wider range of people. However, our consumption can naturalise and make invisible colonial and racialised relations. Thus the violent histories of invasion and starvation by the first white settlers, the convicts whose theft of food had them sent to Australia and absorbed into the cruel colonial project of poisoning, starving and rationing indigenous people remain hidden from view. So although we might love the food we might not care about the cooks at all as Rhoda Roberts Director of the Aboriginal Dreaming festival observed in Elspeth Probyn’s excellent book Carnal Appetites:

In Australia, food and culinary delights are always accepted before the differences and backgrounds of the origin of the aroma are.

Lee’s Ghee is an interesting example of appropriation, she developed an ‘artisanal’ ghee product, something that has been made for centuries in South Asia.

Lee Dares was taking the fashion world by storm working as a model in New York when she realized her real passion was elsewhere. So, she made the courageous decision to quit her glamorous job and take some time to explore what she really wanted to do with her life. Her revelation came after she spent some time learning to make clarified butter, or ghee, on a farm in Northern India. Inspired, she turned to Futurpreneur Canada to help her start her own business, Lee’s Ghee, producing unique and modern flavours of this traditional staple of Southeast Asian cuisine and Ayurvedic medicine.

The saying “We are what we eat” is about not only the nutrients we consume but also to beliefs about our morality. Similarly ‘we’ are also what we don’t eat, so our food practices mark us out as belonging or not belonging to a group.So, food has an exclusionary and inclusionary role with affective consequences that range from curiosity, delight to disgust. For the migrant for example, identity cannot be taken for granted, it must be worked at to be nurtured and maintained. It becomes an active, performative and processual project enacted through consumption. With with every taste, an imagined diasporic group identity is produced, maintained and reinforced. Food preparation represents continuity through the techniques and equipment that are used which affirm family life, and in sharing this food hospitality, love, generosity and appreciation can be expresssed. However, the food that is a salve for the dislocated, lonely, isolated migrant also sets her apart, making her stand out as visibly, gustatorily or olfactorily different. The resource for her well being also marks her as different and a risk. If her food is seen as smelly, distasteful, foreign, violent or abnormal, these characteristics can be transposed to her body and to those bodies that resemble her. Dares attempt to reproduce food that is made in many households and available for sale in many ‘ethnic’ shops and selling it as artisanal, led to accusations of ‘colombusing’ — a term used to describe when white people  claim they have discovered or made something that has a long history in another culture. Also see the critique by Navneet Alang in Hazlitt:

The ethnic—the collective traditions and practices of the world’s majority—thus works as an undiscovered country, full of resources to be mined. Rather than sugar or coffee or oil, however, the ore of the ethnic is raw material for performance and self-definition: refine this rough, crude tradition, bottle it in pretty jars, and display both it and yourself as ideals of contemporary cosmopolitanism. But each act of cultural appropriation, in which some facet of a non-Western culture is columbused, accepted into the mainstream, and commodified, reasserts the white and Western as norm—the end of a timeline toward which the whole world is moving.

If this is the first time someone has heard these concepts, and they’re feeling confused, or a bit defensive, what can they do to understand more about it?

Here are some resources that might help, videos, illustrations, reading and more.

White privilege

  • Toby Morris has created a beautiful illustration of Privilege.  
  • A hilarious look at white male privilege by Elliot Kalan.
  • Video White privilege glasses from Chicago Theological Seminar.
  • 11 Common Ways White Folks Avoid Taking Responsibility for Racism in the US by Robin DiAngelo.
  • A great edited book on whiteness in Australia: Whitening Race: Essays in Social and Cultural Criticism By Aileen Moreton-Robinson
  • McSweeney’s have some hilarious writing on privilege including: a humorous product review of the invisible backpack of white privilege from  by Joyce Miller; Don’t worry, I checked my privilege by Elliot Kalan; Some relatively recent College grads discuss their maids by Ellie Kemper and Privilege-checking preambles of varying degrees of singularity by George Morony.
  • 4 Ways White People Can Process Their Emotions Without Bringing the White Tears by Jennifer Loubriel.
  • The fairest — and funniest — way to split a restaurant bill  by Emily Badger·
  • See the excellent work on privilege by the Whariki Research Group, Massey University, New Zealand.
  • Read about the reductive seduction of other people’s problems.
  • Read more about whiteness, in an interview with Robin DiAngelo.
  • Tim Wise has tons of resources.
  • Check your privilege at the door.
  • View the Unequal Opportunity Race. Screened as part of the Black History Month program at Glen Allen High School in Glen Allen, Virginia.
  • This piece by Ali Owens about 4 problematic statements White people make about race — and what to say instead is useful: “I Don’t See Color.” “All Lives Matter.” “If racism is still a problem, how come we have a black president?” “Reverse racism is real.”
  • The eight ways of being white by Gillian Schutte examines Barnor Hesses’ work (about whiteness studies from a radical black perspective) outlining the eight categories of white identity.
  • An interesting read about privilege in sport using the example of Maria Sharapova and Serena Williams: The Benefit of the Doubt: A Case Study On White Privilege.
  • Whiteness as Metaprivilege.
  • The Subtle Linguistics of Polite White Supremacy.
  • If you’d like to try the group exercise on privilege adapted from the Horatio Alger exercise by Ellen Bettman, you can read the questions here.
  • Oscar Kightley’s terrific take down of the myth of Maori privilege.
  • Brown eye asking about whether Maori seats in New Zealand is privileging Maori.
  • A sobering read Death by gentrification: the killing that shamed San Francisco | Rebecca Solnit.

Cultural appropriation

  • Aarti Olivia has a lovely piece on when it is appropriate to wear Indian cultural items.
  • An exploration of Orientalism & Asian cultural appropriation as found in American music by Ube Empress.
  • A much-needed primer on cultural appropriation by Katie J.M. Baker.
  • More about food and cultural appropriation by Niya Bajaj.
  • Check out this exploration of visual and auditory appropriation in US culture by Portland artist Roger Peet, featuring local residents.
  • A critique of appropriation in fashion, Valentino’s African summer in Parallel magazine.
  • I’ve written about cultural consumption in this piece on food and festivals, also about the white saviour complex and moving from being a bystander to an ally.
  • A useful explanation on the meaning of a Native American headdress and why not to wear one.
  • Brilliant piece by Texta Queen on cultural appropriation, white privilege and art on the fabulous Peril site.
February 13, 2016/by ruth
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Cultural safety, Gender, Inequalities, Mental health, Nursing, Power relations, Writing

Review: Australian mental health nurses and transgender clients: Attitudes and knowledge

This is a longer version of a review of Damien Riggs & Clare Bartholomaeus’ paper published in the Journal of Research in Nursing: Australian mental health nurses and transgender clients: Attitudes and knowledge. Cite as: De Souza, R. (2016). Review: Australian mental health nurses and transgender clients: Attitudes and knowledge. Journal of Research in Nursing, 0(0) 1–2. DOI: 10.1177/1744987115625008

I have never forgotten her face, her body, even though more than twenty years have passed. She was not much older than me and she desperately wanted to be a he. I had no idea how to respond to her depression and her recent self-harm attempt in the context of her desire to change gender. There was nothing in my nursing education that had prepared me for how I might be therapeutic and there was no one and nothing in the acute psychiatric inpatient unit that could resource me. I feel embarrassed now that I had no professional understanding and experience to guide me to help me provide effective mental health care to my client. I was an empathic kind listener, but I had been immersed in a biologically deterministic (one’s sex at birth determines ones’ gender) and binary view of gender despite my own diverse cultural background which I had been socialized to see as separate from my mainly white nursing education. I had not been educated to critically consider discourses of sex and gender, to provide competent safe care to someone who wanted to change her gender and express her gender differently from normative gender categories (Merryfeather & Bruce, 2014). My work has since led me to consider the ways in which “differences” are produced culturally, politically, and epistemologically specifically in terms of categories including “race”, ethnicity, nationality, class, and more recently sexuality and gender.

Four critiques of biomedicine as a dominant framework for understanding ‘problems with living’ have inspired transformation of the mental health system. Firstly, the emphasis on participation and inclusion through consumer-led and recovery-oriented practice has profoundly changed the role of consumers from passive recipients of care to being more informed and empowered decision-makers whose lay knowledge and personal experience of mental illness are a resource (McCann and Sharek, 2014). This reconceptualisation has been formalised in the ‘recovery’ model, which has critiqued the stigmatising judgements of medico-psychiatric discourse about deviance and their accompanying social exclusion and disadvantage (Masterson and Owen, 2006). The third has been the recognition of cultural diversity and a critique of the limits of universalism. Finally, gender activism has exposed fractures in the sex/gender system and has led to a greater awareness of diversity, with regard to gender and sexual orientation.

Of these critiques, gender activism has received the least attention in mental health nursing; which is a concern, given the negative effects of heteronormativity and cisgenderism. Mental health nurses must continue to challenge or trouble the dominant binary views of gender and the discourse of biological determinism, the notion that the sex that one is assigned at birth determines ones’ gender (Merryfeather and Bruce, 2014). There is growing evidence of negative attitudes, a lack of knowledge, and a lack of sensitivity toward people whom are expressing diverse genders and sexualities. This discrimination creates barriers to the patients’ health gain and creates disparity (Chapman et al., 2012; McCann and Sharek, 2014).

The reviewed article on the attitudes of mental health nurses towards transgender people is therefore timely, given the relative invisibility of issues of gender identity within nursing theory, practice and research. As Fish (2010) wrote previously in this journal, the culture, norms and values of social institutions can inhibit access to healthcare and reinforce disparities in health outcomes. Cisgenderism (the alignment of one’s assigned sex at birth and one’s gender identity and gender expression with societal expectations) suffuses every aspect of clinical access to and through services, from written materials including mission statements, forms, posters and pamphlets; the built environment such as gender-specific washrooms; and interactions with both health professionals and allied staff, all of which reinforce a message of exclusion of transgender people (Baker and Beagan, 2014; Rager Zuzelo, 2014). In turn, these exclusionary practices are shaped through a dearth of policies and procedures, and scant educational preparation at the undergraduate and graduate levels (Eliason et al., 2010; Fish, 2010).

Nurses have a professional responsibility to challenge structural constraints and social policies, rather than passively accepting them. This paper provided compelling evidence for how nursing as a discipline and mental health nursing as a unique speciality can critically reflect on discourses regarding sex and gender; and on how these influence practice and consequently, can develop safer, ethical, effective and high-quality care for people whom either change their sex or express their gender differently from the standard culturally determined gender categories (Merryfeather and Bruce, 2014). Furthermore, this paper challenges mental health nurses to challenge heterosexism and cisgenderism; to speak out about social determinants of health that contribute to health inequities and health disparities, such as transphobia; and to address discrimination against transgender people. These challenges must be embedded into processes at the organizational, regulatory and political level (DeSouza, 2015).

References
Baker K and Beagan B (2014) Making assumptions, making space: An anthropological critique of cultural competency and its relevance to queer patients. Medical Anthropology Quarterly 28(4): 578–598. doi:10.1111/maq.1212.
Chapman R, Watkins R, Zappia T, et al. (2012) Nursing and medical students’ attitude, knowledge and beliefs regarding lesbian, gay, bisexual and transgender parents seeking health care for their children. Journal of Clinical Nursing 21(7,8): 938–945. doi:10.1111/j.1365-2702.2011.03892.
De Souza R (2015) Navigating the ethics in cultural safety. In: Wepa D (ed.) Cultural safety. Port Melbourne, Australia: Cambridge University Press, pp. 111–124.
Eliason MJ, Dibble S and Dejoseph J (2010) Nursing’s silence on lesbian, gay, bisexual and transgender issues: The need for emancipatory efforts. Advances in Nursing Science 33(3): 206–218. doi:10.1097/ANS.0b013e3181e63e4.
McCann E and Sharek D (2014) Challenges to and opportunities for improving mental health services for lesbian, gay, bisexual and transgender people in Ireland: A narrative account. International Journal of Mental Health Nursing 23(6): 525–533. doi:10.1111/inm.12081.
Masterson S and Owen S (2006) Mental health service user’s social and individual empowerment: Using theories of power to elucidate far-reaching strategies. Journal of Mental Health 15(1): 19–34. doi:10.1080/0963823050051271.
Merryfeather L and Bruce A (2014) The invisibility of gender diversity: Understanding transgender and transsexuality in nursing literature. Nursing forum 49(2): 110–123.
Rager Zuzelo P (2014) Improving nursing care for lesbian, bisexual and transgender women. Journal of Obstetric, Gynecologic and Neonatal Nursing 43(4): 520–530. doi:10.1111/1552-6909.1247.

January 27, 2016/by ruth
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