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 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 under-graduate 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 intersectionality  be 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.

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.

Women’s health across cultures

Mother and her baby (Getty images).

Social and economic disadvantage are important contributors to poor maternal and perinatal outcomes in high-income countries such as Australia. For example Australian research shows women from refugee
backgrounds have higher rates of stillbirth, fetal death in utero and perinatal mortality compared with Australian born women. However, the recent publication of findings from a retrospective (looking back) population based cohort study of all individual (as opposed to multiple) births at 24 or more weeks gestational age from 2000–2011 in Victoria, Australia, found that the mother’s country of birth was also an important factor in having a baby who was stillborn.

The place of birth of pregnant women has important implications for risk of stillbirth in high-income countries, as research in the UK, Netherlands, Sweden, Singapore and Australia has shown. Yet, only the American Congress of Obstetricians and Gynecologists (ACOG) clinical guidelines recognise ‘black women’ as being at increased risk of stillbirth. Other clinical guidelines are silent on maternal region of birth  including the Royal College of Obstetricians and Gynaecologists, the National Institute of Clinical Excellence, and the Royal Australian and New Zealand College of Obstetricians and Gynaecologists. A significant omission considering migration remains a feature in those countries. The authors found that women who were born in South Asian or Africa have a significantly higher rate of stillbirth. However, women who were born in South East/East Asian had lower rates of stillbirth. This equates to women born in South Asia having an almost two and a half times greater chance of having a late pregnancy stillbirth than a woman who was born in Australia accessing the same public maternity services. The authors recommend that all clinical guidelines should recognize the importance of maternal region of birth (as an independent) risk factor for stillbirth.

This is only one example where ethnicity, faith, culture and place of birth matter, not just in terms of attitudes and expectations about pregnancy, labour and birth but in the context of risk factors for adverse maternal and perinatal outcomes. Recently, I was part of a webinar panel hosted by the Jean Hailes centre, a women’s health organisation, which focused on: culture and its impact on health; culturally safe practice; communication and health literacy and strategies to enhance practice. Along with Monique Hameed (Multicultural Centre for Women’s Health) and Natalija Nesvadba (Multicultural Services, Mercy Health, Victoria). The free ninety minute webinar for which participants are eligible for
RACGP – 3 Category 2 QI&CPD points can be accessed here. It’s structured with three presentations and then two case studies. Further resources below.

Further reading

Useful multilingual resources from the Health Translations Directory

The Health Translations Directory managed by the Centre for Culture, Ethnicity and Health, comprises a searchable database with over 14,000 translated online health resources in over 100 languages:

Pregnancy and post-natal care resources 
Women’s Health resources

Refs

  • Davies-Tuck, M. L., Davey, M.-A., & Wallace, E. M. (2017). Maternal region of birth and stillbirth in Victoria, Australia 2000-2011: A retrospective cohort study of Victorian perinatal data. PloS One, 12(6), e0178727.
  • Yelland, J., Riggs, E., Szwarc, J., Casey, S., Dawson, W., Vanpraag, D., … Brown, S. (2015). Bridging the Gap: using an interrupted time series design to evaluate systems reform addressing refugee maternal and child health inequalities. Implementation Science: IS, 10, 62.

The impact of walk-in centres and GP co-operatives on emergency department presentations

It’s always such a buzz to get published, especially when it’s work done with a former student. You can read the article here: Crawford, J., Cooper, S., Cant, R., & DeSouza, R. (2017). The impact of walk-in centres and GP co-operatives on emergency department presentations: A systematic review of the literature. International Emergency Nursing. https://doi.org/10.1016/j.ienj.2017.04.002.

Highlights

  • Workload and resource pressures on EDs require the development of applicable minor illness and injury pathways.
  • Walk-in-centres have the potential to reduce ED workloads but more work is required to substantiate this pathway.
  • GP cooperatives can reduce ED workloads but further evidence is required to be confident of the efficacy of this care pathway.

Abstract

Background
Internationally, non-urgent presentations are increasing the pressure on Emergency Department (ED) staff and resources. This systematic review aims to identify the impact of alternative emergency care pathways on ED presentations – specifically GP cooperatives and walk-in clinics.

Methods
Based on a structured PICO enquiry with either walk-in clinic or GP cooperative as the intervention, a search was made for peer-reviewed publications in English, between 2000 and 2014. Medline plus, OVID, PubMed, and Google Scholar were searched. The Critical Appraisal Skills Program (CASP) guidelines were used to assess study quality and data was extracted using an adapted JBI Qualitative Assessment and Review Instrument (QARI). Subsequent reporting followed the PRISMA guideline.

Results
Eleven high quality quantitative studies met the inclusion criteria. Walk-in clinics do have the potential to reduce non-urgent emergency department presentations, however evidence of this effect is low. GP cooperatives offer an alternative care stream for patients presenting to the ED and do significantly reduce local ED attendances. Community members need to be made aware of these options in order to make informed treatment choices.

Conclusion
GP cooperatives in particular do have the potential to reduce ED workload. Further research is required to uncover recent trends and patient outcomes for walk-in clinics and GP cooperatives.

Keywords:
Emergency medical services, Triage, Outcome and process evaluation-health care, Physicians primary healthcare, General practice

Six questions for culture in the age of consumer health technologies: Public lecture

I am visiting the University of Auckland as an international speaker for the Research Café on Migration & Inequality being organised by the Faculty of Science and School of Population Health. The Research Café is a project of the Engaged Social Science Research Initiative and funded by the Vice-Chancellor’s Strategic Development Fund. I’ll also be giving a public lecture on Wednesday 7th December in Room 730-268 at the School of Population Health: 11.30am -12.20pm:

“Wearables” are a growing segment within a broader class of health technologies that can support healthcare providers, patients and their families as a means of supporting clinical decision-making, promoting health promoting behaviours and producing better health literacies on both sides of the healthcare professional-consumer relationship. Mobile technologies have the potential to reduce health disparities given the growing ubiquity of smartphones as information visualisation devices, particularly when combined with real-time connections with personal sensor data. However despite the optimism with which wearable health technology has been met with, the implementation of these tools is uneven and their efficacy in terms of real-world outcomes remains unclear. Wearables have the potential to reduce the cultural cognitive load associated with health management, by allowing health data collection and visualisation to occur outside the dominant languages of representation and customised to a user experience. However, typically, “wearables” have been marketed toward and designed for consumers who are “wealthy, worried and well”. How can these technologies meet the needs of culturally diverse communities?

This presentation reports on the findings from a seminar and stakeholder consultation organised by The Centre for Culture, Ethnicity and Health, in partnership with the University of Melbourne’s Research Unit in Public Cultures and the Better Health Channel. The consultation brought together clinicians, academics, developers, community organisations, and policymakers to discuss both the broader issues that wearable technologies present for culturally and linguistically diverse (CALD) communities, as well as the more specific problems health-tracking might pose for people from diverse backgrounds. This presentation summarises the key issues raised in this consultation and proposes future areas of research on wearable health technologies and culturally and linguistically diverse (CALD) communities.

Dr. Ruth De Souza is the Stream Leader, Research Policy & Evaluation at the Centre for Culture, Ethnicity & Health in Melbourne. Ruth has worked as a nurse, therapist, educator and researcher. Ruth’s participatory research with communities is shaped by critical, feminist, and postcolonial approaches. She has combined her academic career with governance and community involvement, talking and writing in popular and scholarly venues about mental health, maternal mental health, race, ethnicity, biculturalism, multiculturalism, settlement, refugee resettlement, and cultural safety.

Contact for Information: Dr Rachel Simon Kumar r.simon-kumar@auckland.ac.nz

 

 

Mouthing off about oral health

I have had several tooth adventures. The time I rather enthusiastically pushed my middle sister on her bicycle and she fell over the handlebars breaking a tooth (or was that the time I helped her break her collar-bone?). My own dental fluorosis (a developmental disturbance of enamel that results from ingesting high amounts of fluoride during tooth mineralization) and my mother’s sobering experience of periodontal disease. Not to mention my parents’ adventures in dental tourism, but I’ll save those for another time.

Apart from the personal injunction to clean and floss my teeth, I didn’t think too much about oral health as a mental health clinician until I’d left clinical practice for education, when I found myself at AUT University in a faculty committed to inter-professional education and practice, where “current or future health professionals to learn with, from, and about one another in order to improve collaboration and the quality of care.”

 

We had learned about oral health as undergraduate nurses, particularly about post-operative oral health care and oral health for older people. But even when working in acute mental health units, community mental health and maternity, I hate to admit, oral health wasn’t on my mind. Unsurprisingly, evidence shows that even though oral health is a major determinant of general health, self esteem and quality of life, it often has a low priority in the context of mental illness (Matevosyan 2010).

As the programme leader of health promotion at AUT, a colleague in the oral health team asked me to talk to her students about the connections between mental health and oral health and that’s when my journey really began. I also had the pleasure of getting my teeth cleaned and checked at the on site Akoranga Integrated Health at AUT whose services were provided by final year and post graduate health science students under close supervision of a qualified clinical team.

It made me think about how oral health care is performed in a highly sensual area of the body. I learned that oral tissues develop by week 7 and the foetus can be seen sucking their thumb. It made me think about how suckling and maternal bonding are critical after birth. It made me think about how we use our mouths to express ourselves and to smile or show anger or shyness, literally 65% of of our communication. It made me think about kissing in intimate relationships and therefore also about how it’s not at all surprising that our mouths also represent vulnerability and that people might consequently suffer from fear and anxiety around oral health treatment. This can range from slight feelings of unease during routine procedures to feelings of extreme anxiety long before treatment is happening (odontophobia). Reportedly, 5-20% of the adult population reports fear or anxiety of oral health care, which can lead to avoidance of dental treatment and common triggers can include local anaesthetic injection and the dental drill.

Poor oral health has a detrimental effect on one’s quality of life. Loss of teeth impairs eating, leading to reduced nutritional status and diet-related ill health. A quarter of Australians report that they avoid eating some foods as a consequence of the pain and discomfort caused by their poor dental health. Nearly one-third found it uncomfortable to eat in general. Oral disease creates pain, suffering, disfigurement and disability. Almost one-quarter of Australian adults report feeling self-conscious or embarrassed because of oral health problems, impacting on enjoyment of life, impairing social life or leading to isolation with compromised interpersonal relationships

People with severe mental illness are more likely to require oral health care and have 2.7 times the general population’s likelihood of losing all their teeth (Kisely 2016). Women with mental illness have a higher DMFT index (the mean number of decayed, missing, and filled teeth) (Matevosyan 2010). In particular, oral hygiene may be compromised. For people who experience mood disorders, depressive phases can leave person feeling worthless, sad and lacking in energy, where maintaining a healthy diet and oral hygiene become a low priority. The increased energy of manic episodes can mean energy is diffused, concentration difficulties and poor judgement. People who experience mental ill health and who self-medicate with recreational drugs and alcohol can further exacerbate poor oral health. Furthermore, drug side effects can compromise good oral health by increasing plaque and calculus formation (Slack-Smith et al. 2016). It is important for mental health support staff to provide information regarding oral health, in particular education about xerostomic (dry mouth) effects of drug treatment and strategies for managing these effects including maintaining oral hygiene, offering artificial saliva products, mouthwashes and topical fluoride applications.

There are organisational and professional barriers to better oral health in mental health care. Mental health nurses do not routinely assess oral health or hygiene and lack oral health knowledge or have comprehensive protocols to follow. As Slack-Smith et al. (2016) note there are few structural and systemic supports in care environments with multiple competing demands. Research shows that dentists are more likely to extract teeth than carry out complex preventative or restorative care in this population. Mental health clinicians are reluctant to discuss oral health and in turn oral health practitioners are not always prepared for providing care to patients with mental health disorders.

Which brings me to the topic of this blog post. Until the 17th century, medical care and dental care were integrated, however, dentistry emerged as a distinct discipline, separate from doctors, alchemists and barbers who had had teeth removal in their scope of practice (Kisely 2016).

Cox, S.; A Country Toothdrawer; Wellcome Library; http://www.artuk.org/artworks/a-country-toothdrawer-125814
Cox, S.; A Country Toothdrawer; Wellcome Library; http://www.artuk.org/artworks/a-country-toothdrawer-125814

I spent the weekend at the Putting the Mouth Back into the Body conference, an innovative, multidisciplinary health conference hosted by North Richmond Community Health. It got me thinking about the place of the mouth in the body and developed my learning further. The scientific method and the mechanistic model of the body central to the western biomedical conception of the body, have led us to see the body in parts which can be attended to separately from each other. And yet we know what affects one part of the body affects other parts. There’ll be an official outcomes report produced from the conference, but I thought I’d capture some of my own reflections and learning in this blog post.

Equity and the social determinants of dental disease

Tooth decay is Australia’s most prevalent health problem with edentulism (loss of all natural teeth) the third-most prevalent health problem. Gum disease is the fifth-most prevalent health problem. Tooth decay is five times more prevalent than asthma in children. Oral conditions including tooth decay, gum disease, oral cancer and oral trauma create a ‘burden’ due to their direct effect on people’s quality of life and the indirect impact on the economy. There are also significant financial and public health implications of poor oral health and hygiene. Hon. Mary-Anne Thomas MP, Parliamentary Secretary for Health and Parliamentary Secretary for Carers spoke about the impact of oral health on employment. She reinforced research findings which show that people with straight teeth as 45 per cent more likely to get a job than those with crooked teeth, when competing with someone with a similar skill set and experience. People with straight teeth were seen as 58 per cent more likely to be successful and 58 per cent more likely to be wealthy. Dental health is excluded from the Australian Government’s health scheme Medicare, which means that there is significant suffering by those who cannot afford the cost of private dental care for example low-income and marginalised groups. Dental care only constitutes 6% of national health spending and comprehensive reform could be effected with the addition of less than 2 percentage points to this says a Brotherhood of St Lawrence report (End the decay: the cost of poor dental health and what should be done about it by Bronwyn Richardson and Jeff Richardson (2011)). The socially
disadvantaged also experience more inequalities in Early Childhood Caries (ECC) rates. Research has also shown that children from refugee families have poorer oral health than the wider population. A study by my colleagues at North Richmond Community Health and University of Melbourne found that low dental service use by migrant preschool children. The study recommended that health services  consider organizational cultural competence, outreach and increased engagement with the migrant community (Christian, Young et al., 2015).

The interactions between oral health and general health 

Professor Joerg Eberhard spoke about the interactions between oral and general health through the lifespan. His talk also demonstrated the importance of oral hygiene, not only to prevent cavities and gum disease but impact on pregnancy, diabetes and cardiovascular health. 50 to 70 per cent of the population have gingivitis and severe gum disease (periodontitis) which develop in response to bacterial accumulation have adverse effects for general health. He showed participants the interactions of oral health and general health with a focus on diabetes mellitus, cardiovascular disease and neurodegenerative diseases. Most strikingly, Eberhard’s research published in The International Journal of Cardiology in 2014, showed periodontitis could undermine the major benefits of physical activity. If you are interested in the link between oral health and non-communicable diseases, this Sydney Morning Herald article provides a great summary.

Key points:

  • What effects the body also affects the mouth, in fact this is bidirectional.
  • Early experiences impact lifelong health eg sugar preference, early cavities, diet.

Sugar is a significant culprit

I learned a lot about sugar from Jane Martin the Exective Manager of the Obesity Policy Coalition and Clinical Associate Professor Matthew Hopcraft an Australian dentist, public health academic and television cook. 52% of Australians exceed the WHO recommendations for sugar intake, and half of our free sugars come from beverages. Sugar intake profoundly impacts cavities and our contemporary modes of industrial food production are to blame. We also need to challenge the subtle marketing of energy dense nutrient poor products eg the ubiquity of fizzy drink vending machines. To that end both Universities in the United States and health services worldwide (see NHS England) are taking the initiative to phase out the sale and promotion of sugary drinks at their sites. At the University of Sydney a group of students, researchers and academics are taking this step through the Sydney University Healthy Beverage Initiative. Check out this fabulous social marketing campaign with indigenous communities in Australia by Rethink Sugary DrinkSugar-free Smiles advocate for public health policies and regulatory initiatives to reduce sugar consumption and improve the oral health of all Australians. There’s also the Sugar by half campaign.

sugary-drinks

Key points:

  • We need to think about what we are eating.
  • Oral health promotion and oral health literacy are important.
  • We need to think about the addition of sugar in foods that are ostensibly good for us (cereal and yoghurt for breakfast for example).

The case for working collaboratively: The example of pharmacists

Dr Meng-Wong Taing (Wong) from the University of Queensland persuasively argued how other professionals can have a major role in promoting both oral health and helping to lower the risk of suffering other serious conditions, such as diabetes or cardiovascular disease. Wong cited recent research findings describing the role of Australian community pharmacists in oral healthcare that show 93 per cent of all community pharmacists surveyed believed delivering oral health advice was within their roles as pharmacists. People in lower socio-economic areas often can’t afford to see a dentist and so pharmacies are the first port of call for people experiencing oral health issues. The 2013 ‘National Dental Telephone Interview Survey’, which found the overall proportion of people aged five and over who avoided or delayed visiting a dentist due to cost was 31.7 per cent, ranging from 10.7 per cent for children aged five-14 to 44.9 per cent for people aged 25-44.

Wong’s presentation and those of other speakers over the two days showed the importance of Interprofessional Collaboration (IPC)

IPC occurs when “multiple health workers from different professional backgrounds provide comprehensive services by working with patients, their families, carers, and communities to deliver the highest quality of care across settings” (WHO 2010, p. 13).

Key points:

  • How do we get oral health in health professional curricula? Particularly given the emphasis on the technocratic and acute at the expense of health promotion and public health.
  • How can we focus on oral health from a broader social determinants perspective?
  • Let’s improve access to services and oral health outcomes.
  • Let’s develop inter-professional approaches to undergraduate education.
  • Let’s develop collaborative approaches and avoiding the ‘siloing’ of oral health.
  • Let’s encouraging partnerships between oral health professionals and other health professionals, community groups and advocacy groups.
  • Rather than developing better systems, let’s have better relationships that are consumer centred (see above and AUT’s Interprofessional Education and Collaborative Practice (IPECP) website.

Perhaps the best news of the two days for me is that milk, cheese and yoghurt and presumably paneer, contain calcium, casein and phosphorus that create a protective protein film over the enamel surface of the tooth thereby reducing both the risk of tooth decay and the repair of teeth after acid attacks. This information validates my enjoyment of sparkling wine (low sugar but acidic) and cheese. Cheers.

Wearable devices and the potential for community health improvement

Written for and first published in in the August 2016 edition of Nurse Click  (the Australian College of Nursing’s monthly electronic, interactive PDF publication available to ACN members, and to stakeholders, the wider nursing and non-nursing community who subscribe to it.). Cite as: DeSouza, R. (2016). Wearable devices and the potential for community health improvement. Nurse Click, August, 14-15 (download pdf 643KB nurseclick_august_2016_final)

TV Glasses (1964)
TV Glasses (1964)

“Wearable technology“, “wearable devices“, and “wearables” all refer to electronic technologies or computers that are incorporated into items of clothing and accessories which can comfortably be worn on the body. These wearable devices can perform many of the same computing tasks as mobile phones and laptop computers; however, in some cases, wearable technology can outperform these hand-held devices through their integration into bodily movements and functions through inbuilt sensory and scanning features, for example. Wearables include: smart watches, fitness trackers, head mounted displays, smart clothing and jewellery. There are also more invasive varieties including implanted devices such as micro-chips or even smart tattoos, insulin pumps, or for contraception. The purpose of wearable technology is to create constant, seamless and hands-free access to electronics and computers.

Wearables are all about data. Thanks to recent advancements in sensors, we’re able to collect more information about ourselves than ever and use that data to make healthcare personal and tailored to our needs. Traditionally, qualitative health research and much clinical interaction relies on self-reporting by consumers, which is then interpreted by researchers and published for incorporation into practice by health practitioners. Along the way, much important information is “lost in translation”. New consumer healthcare technologies are brokering a shared informational interface between caregivers, clinicians, communities and researchers, allowing practitioners to access richer and more detailed empirical data on health consumer activity and their participation in health-seeking activities.

Consumer health technologies offer potential for care to be more equitable and patient-centred. The technological promise also brings concerns, including the impact on the patient-provider relationship and the appropriate use and validation of technologies. Technologies are also developed with particular service-users in mind, and rarely designed with the participation of people from structurally and culturally marginalised communities. In turn, the impacts of these technologies on health service education, planning and policy are far reaching. It is important that technology is not demographically blind, from a public health and community health perspective it must not reinforce the structural inequalities that exist between those who have access to health and those who haven’t.

The Centre for Culture, Ethnicity and Health, in partnership with the University of Melbourne’s Research Unit in Public Cultures and the Better Health Channel, recently organised a seminar and stakeholder consultation in Melbourne on July 28th with the aim of shaping a research agenda on wearable health technologies and culturally and linguistically diverse (CALD) communities. Typically wearables have been marketed toward the ‘wealthy worried and well’ demographic and the purpose of the seminar was to discuss both the generic issues that emerging wearable technologies present, as well as the unique issues for people from diverse backgrounds. The three hour event brought together clinicians, academics, developers, community organisations, and policymakers to consider the future issues with these technologies.

Seminar. Photo credit Jared Kuvent
Seminar. Photo credit Jared Kuvent

The first speaker was University of Melbourne researcher and lecturer Suneel Jethani who expressed scepticism about what wearable health technologies really may deliver for health, particularly for CALD communities. Suneel explored the growth of wearable health technologies through the notion of the pharmakon, the notion that every medicine is also poison, with the devices having capacity to be both beneficial and harmful. Janette Gogler, a Nurse Informatician from Melbourne’s Eastern Health described a randomised control trial of emerging technologies for remote patients with chronic heart failure and chronic obstructive pulmonary disease (COPD). In this trial patients took a number of their own physiological measurements including electrocardiography (ECG) monitoring, blood pressure, and spirometry. While the trial led many patients to feel more in control of their health through a better understanding of their physiology, there were also challenges, including having to manage their expectations of the technology, where patients who became suddenly unwell were upset that the system had not given them forewarning, even though the issues were outside the scope of the devices. Janette also raised the issue of research excluding speakers of additional languages. The final speaker was Deloitte Digital partner Sean McClowry, who noted that the uptake of wearable health technologies has been slower to reach ‘digital disruption’ compared to the smart phones, but saw the likelihood of exponential growth through a new model of care. Sean raised questions about the unprecedented nature of data: how to make it high quality and its analysis meaningful. The session by the three panellists was followed by two youth respondents and a question and answer session and then break out groups which developed further questions and issues for an emerging research program.

In the stakeholder consultation a number of critical themes emerged from many participants: the need to carefully manage privacy; the lack of accuracy of much consumer information; certification of apps; Western models of individual health hard-wired into the platform; the potential of peer support from new technologies; challenges for existing workforces and roles; and the potential of research to stigmatise as well as assist CALD communities. What was agreed was that consumer health technologies were only going to continue to grow and that no part of the health system would be undisrupted by the changes ahead, both intimidating and exciting!

Sensing horizontality: I bought a wearable device to monitor my sleep

Are you a  night owl or an early bird? Or do you fall in between? I succumbed and bought a wearable device because I thought it could be useful to track my sleep. I spend a few nights in the city every week and I notice that I feel less rested than when I am ‘home’. It seems the right time to buy a wearable device, I am co-organising a Wearables seminar on July 28th 2016 at the Centre for Culture, Ethnicity and Health. I’ve also been invited by Croakey to guest tweet on @WePublicHealth and I want to explore how the concepts of consumer participation, health literacy and cultural competence are changing with technologisation in health care. Check out this interview with Marie McInerney editor at Croakey on Youtube if you are interested in the seminar). I’ve also just started a course at QUT on Social media and data analytics as an entry point into beginning to understand what kinds of data are being generated and what can be done with that.

Jawbone from the Harvey Norman catalogue
Jawbone from the Harvey Norman catalogue

 

Wearable health technologies are growing in social acceptance and use, especially for people interested in fitness and health monitoring as a form of preventative medicine. As sensors become cheaper and smaller, many kinds of health-related data that previously relied upon clinical equipment are becoming available for continuous self-monitoring by patients and consumers. In effect, these technologies are turning the body into media, so that a health consumer can become their own twenty four hour news channel focused entirely on the realtime representation of wellbeing.

Wearable technology platforms have been dominated by the English-speaking middle-classes, (“the wealthy, worried and well” as Michael Paasche-Orlow suggests), limiting the community benefits of enhanced participation and health. Barbara Feder Ostrov notes:

But Fitbits aren’t particularly useful if you’re homeless, and the nutrition app won’t mean much to someone who struggles to pay for groceries. Same for emailing your doctor if you don’t have a doctor or reliable Internet access.

The diffusion of mobile phones (that can also be used as health monitoring devices) indicates that these technologies will only expand to a wider range of users. 

IMG_5187

What are wearables?

Wearable devices or “wearable technology” and “wearables”  refer to electronic technologies or computers that are incorporated into clothing and accessories and worn on the body. They can include smart watches
fitness trackers, head mounted displays, smart clothing and jewellery. They do many things that mobile phones and laptop computers do, but some also have features not seen in mobile and laptop devices. Sensory and scanning features can provide biofeedback and track physiological function. There are also more invasive devices which can implanted such as micro-chips, smart tattoos, pumps.

Why is everyone talking about wearables now?

The world of health information is undergoing significant transformation in the digital era. New media channels such as the Internet allow access to on-demand health information outside of authoritative channels; and new technologies such as fitness trackers and wearables produce a wide range of personal health information. Several trends have increased attention on technologies in health including the democratising role of the internet, leading to the emergence of more intensively informed health consumers who expect more precise and individualised care; the ubiquity and mobility of network communications, allowing the immediate bidirectional transfer of information between individuals and systems; the role of social media in providing networks for sharing both personal data and health experiences; and the increasing cost of health care and the potential for technology to make health management more efficient.

What are the benefits?

Traditionally, much clinical interaction relies on self-reporting by consumers, which is then interpreted by researchers and published for incorporation into practice by health practitioners. Along the way, much important information is “lost in translation”. New consumer healthcare technologies are brokering a shared informational interface between caregivers, clinicians, communities and researchers, allowing practitioners to access richer and more detailed empirical data on health consumer activity and their participation in health-seeking activities. Consumer health technologies offer potential for care to be more equitable and patient-centred. In turn, the impacts of these technologies on health service education, planning and policy are far reaching. More about benefits.

Could wearables enhance independence and participation?

Advances in health mean that residents of industrialized countries live longer, but with multiple, often complex, health conditions. Health technologies can expand the capabilities of the health care system by extending its range into the community, improving diagnostics and monitoring, and maximizing the independence and participation of individuals (Patel, Park, Bonato, Chan and Rodgers, 2012). The United Kingdom’s National Health Service (NHS) is giving millions of patients free health apps & connected health devices in a bid to promote self-management of chronic diseases. Wearable sensors also have diagnostic and monitoring applications, which can sense physiological, biochemical and motion changes. Monitoring could help with the diagnosis and ongoing treatment of people with neurological, cardiovascular and pulmonary diseases including seizures, hypertension, dysrhythmias, and asthma. Home-based motion sensing might assist in falls prevention and help maximize an individual’s independence and community participation.

What are the concerns about wearables?

The technological promise also brings concerns, including the impact on the patient-provider relationship; and the appropriate use and validation of technologies. Technologies are also developed with particular service-users in mind, and rarely designed with the participation of people from structurally and culturally marginalised communities. Despite the ubiquity and access to apps, wearables and websites, the lack of science might preclude behaviour change (e.g. no set of standards) and the “average person” could struggle to choose an app that is effective at changing health behaviour. People are anxious about whether their health data can be used against them. Workplace surveillance and tracking employees has become a health and safety issue. There’s concern about whether we can trust the scientific rigor of the apps we are using, for example the accuracy of the heart rate tracker of the Fitbit and concerns about security.

What impact will technologies have on health professional roles?

Health professionals will have to consider how they work with clients in the context of these technologies. The capacity to review and share healthcare experiences is already available. Technologies will require changes in rules, business models, workflow and roles. The advent of authoritative websites like the Better Health Channel, means that health professionals may no longer be the ultimate gate-keepers of knowledge, their role might shift to being health coaches who empower clients to monitor and improve their health by using their own data. They might have a larger role in care coordination and managing care transitions through the use of mobile health apps. They could play a greater role in research at the point of care through data gathering in research projects. They could play a greater role in evaluating the quality and appropriateness of particular apps. Technology could also free up time to care. Nurses often spend more time collecting information rather than looking after patients. One study showed 60 % of the nurse’s/midwife’s time was spent collecting information and only 15% caring for their patients. ePrescription systems in Sweden, the US and Denmark increased health provider productivity per prescription by over 50%.5. eReferrals in Europe reduced the average time spent on referrals by 97%.6. So, there is potential for the enhancement of health system design: workflow and the coordination of care. There will also need to be better support for innovation as this post from The Medical Startup notes:

How can you innovate where your environment is slow to respond to change, and, despite best intentions, has trouble understanding the few (or many) employees who want to do more, but can’t articulate their feelings? How can you innovate when you risk being penalised or even kicked out of a specialty college that you’ve worked so hard to enter?

Health professionals will also need data management or data analytic skills in order to best use the data wearable health technologies generate. The data will range from public health intelligence (for example tracking outbreaks); using data as a diagnostic tool; to follow up treatment plans; to provide access to the personas, problems, goals and preferences which can then improve the care plan through tailored information and also improve engagement and activation. Health professionals will also need to find ways to prepare patients better for their appointments so that the time they spend is better used.

What kinds of workforce preparation will be necessary for using technologies effectively?

The Digital Skills for Health Professionals Committee of the European Health Parliament surveyed over 200 health professionals about their experience with digital health solutions, and a large majority reported to have received no training, or insufficient training, in digital health technology. The committee recommended continuous education of health professionals in the knowledge, use and application of digital health technology. Curricula will need to be updated to prepare health professionals for using mobile apps/diagnostic and data monitoring tools to the nurses’ repertoire of skills and competencies and larger focus on patient-centered care and consumer engagement in health promotion and maintenance activities. Will there be new roles for ‘informaticians’ whose job is to help download apps, set it up, teach patients how to use it to make health messages more understandable? Educators will need to consider how they teach students to use technology and integrate the use of mobile technology into learning experiences and clinical practice. They’ll need to consider how to use technology such as texts, mobile telephones, or video for health promotion and disease prevention. They will also need an understanding of informatics and how health data are stored, transmitted, and used, as well as the use of the electronic health record in patient-centered care planning (Kennedy, Androwich, Mannone, & Mercier, 2014).

Could benefits be realised for people from CALD backgrounds?

As one of the most culturally diverse communities in the world which accounts for around one-third of migrant settlement in Australia, Victorians born overseas as a percentage of the population have grown by 29 per cent from 2001 to 2011—from just below 1.1 million people to 1.4 million (VARG, 2014). The Auditor General notes in the VARG report (2014) that:

Migrants, particularly those with low English proficiency or poor literacy in their own language, and refugees and asylum seekers are among our most vulnerable members of the community. This is because they often have complex needs, particularly in relation to health, welfare and language services. A whole-of-government approach to the broader area of multicultural affairs should improve integration, reduce duplication and better identify gaps in services.

Evidence is growing that the the greater the health literacy of an individual, the greater the likelihood of health maintenance and promotion. Low health literacy is associated with more adverse health outcomes (people with low levels of individual health literacy are between 1.5 and 3 times more likely to experience an adverse health outcome (DeWalt et al. 2004 cited in ACSQHC 2013c). People from refugee and migrant backgrounds may be disadvantaged in the health system because they are in the process of developing their health literacy and capital. Access to and through health care is a significant aspect of feeling a sense of belonging and worth, so improvements in health participation will also have a significant impact on broader social inclusion.  We need to explore how low health literacy/data literacy affect the use of health information, merely having access to information in apps is no guarantee that you can use the information.

Last night's sleep
Last night’s sleep

It’s going to be interesting seeing what data comes out of the Jawbone app. Having had it for two days I can see that it provides useful data about the type of sleep I’ve had. What I do with the information will be one of the questions I grapple with next.

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Health Literacy and Consumer-Facing Technology: Workshop Summary
By Roundtable on Health Literacy, Board on Population Health and Public Health Practice, Institute of Medicine, National Academies of Sciences, Engineering, and Medicine.