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.

Refs

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.

Smells and bodies out of place: Microaggressions on public transport

A winter evening, wet and cold. Squashed into a tram. When a seat became available, I swooped down into it, finding myself next to a woman who proceeded to cover her nose. As she fanned her face with her other hand, I asked her with gentle concern if she was ok. She responded vehemently and with a force I didn’t expect: “It stinks in here, full of people smelling of onions and curry and shit”. Hmm. We were surrounded by Indians including me.

The new super sized E tram leaves the South Melbourne Depot. Pic. Nicole Garmston
The new super sized E tram leaves the South Melbourne Depot. Pic. Nicole Garmston

It’s not the first time I’ve had funny looks and comments about food and smells but the last time was when it was referring to my lunchbox, quite a few decades ago. The incident on the tram made me think about how smells are political (Manasalan). I’m writing about smells in hospitals in a book chapter coming out later this year and I am interested in what makes some public smells acceptable (for example disinfectant) and other more organic smells not so acceptable or even disgusting.

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 soul sustaining resource also marks her as different, 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.

Laksa by Ruth De Souza
Laksa by Ruth De Souza

Food smells categorise groups of people who are different, and those viewed as negative are seen as a marker of non-western primitiveness. The emotion of disgust is emblematic of the too-near proximity of others and the fear that we might be invaded through our mouths. Probyn writes:

disgust reveals the object in all of its repellent detail, it causes us to step back, and, in that very action, we are also brought within the range of shame

However, nutritional assimilation or sanitisation to become odourless and modern does not guarantee belonging, like citizenship it remains thin when compared to the affective power of ethnic identity. (DeSouza, in press).

Grinding my own spice mix, by Ruth De Souza
Grinding my own spice mix, by Ruth De Souza

I am a committed foodie (defined by Johnston and Baumann, 2010: 61), as ‘somebody with a strong interest in learning about and eating good food who is not directly employed in the food industry’ who is also interested in the politics of food. My partner and I commute to Melbourne, a foodie paradise. Melbourne’s 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 points out:

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

Sometimes though the acceptance is also class based or related to gentrification take Nick Earles’ point:

But it wasn’t as bad as being the kid from the Italian family who had his “wog” lunch thrown in the bin most days, only to watch the perpetrators spend $10 in cafes 20 years later for the exact same food – focaccia and prosciutto – with no recollection of what they’d done.

It’s been a long time since I’ve experienced someone else’s visible disgust. How to negotiate the smell that is out of place and the identity that does not belong? An ongoing process, but I’ve had plenty of practice.

Jellyfish and cabbage salad, by Ruth De Souza
Jellyfish and cabbage salad, by Ruth De Souza

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://www.ruthdesouza.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.

Receiving the stranger: Moving from individual to collective and community responsibility

This is a longer version of a foreword in the Winter 2016 edition of the Hive (the Australian College of Nursing’s quarterly publication). After the refs, I’ve added my own experience of living through Cyclone Isaac, which was declared by the Tongan authorities to have been the worst disaster in Tongan history.  You can also download the pdf of Receiving the stranger.

#14 Winter 2016, Disaster Health
#14 Winter 2016, Disaster Health

If one agrees that the manner in which a society receives refugees (the stranger) and upholds their rights is a fairly accurate barometer of the extent to which human rights are generally respected, it follows that an investment in promoting the rights of refugees is a an investment in a more just society for all (Harrell-Bond, 2002, p.80).

This special issue on disaster health acknowledges the relational aspects of being a human. A disaster is the widespread disruption and damage to a community that exceeds its ability to cope and overwhelms its resources  (Mayner & Arbon, 2015, p.24). At times of disaster, people need help, and nurses are often on the front line. This is because even outside of what we usually understand to be a disaster, nurses typically work with people and communities who have exhausted their own resources or who need infrastructural and systemic support to galvanise their resources and strength.

Tonga High School clean up (Photo by Edwin De Souza, 1982).

The call to care that we associate with nursing practice is often juxtaposed with an uncaring social and political context. This leads many nurses to experience moral distress, defined by Jameton (1984) as “aris(ing) when one knows the right thing to do, but institutional constraints make it nearly impossible to pursue the right course of action”.  The lack of care in our border discourse reflects how devoid of context the issue of migration is in political debates. Fleeing bodies are objectified and dehumanised by politicians who trumpet xenophobic and alarmist discourses of fear. These discourses are oriented toward a mass media for distribution to people as a proxy for actual engagement with refugees and asylum seekers, underpinning cruel deterrence policies and for-profit detention of vulnerable people. For the practitioner, even if one is concerned, the dominant economic order of neoliberalism keeps us focussed on outputs rather than relationships, we keep our heads down to keep up. Our working situations often pull up the drawbridges to our hearts and selves so we can survive.

Wharf (Photo by Ruth De Souza, 1982).

The work of the three refugee health nurses and an arts practitioner working for refugee support organisation RISE provides important lessons for us, even if we do not work directly with former refugees. The profiles emphasise the relational aspects of nursing: skilled, empathetic, compassionate care that is tailored, solution-oriented, flexible and seen as safe by the recipient. Care which is delivered by providers who are skilled communicators who use interpreters as needed: cultural competence is not about being of a particular culture but of knowing how to bring resources to a new cultural situation where one has limited expertise. The practitioners profiled here continuously attempt to improve through evaluation and overcome resource constraints to work toward models of care that facilitate shared decision-making. And outside the clinical relationship, these practitioners articulate and demand strategic interventions to disrupt institutionalised discourses and practices that have a marginalising effect on vulnerable communities.

Paradoxically, this move from individual to collective and community responsibility – demanding in an individualist culture – can resource our weary hearts, minds and bodies. The critical perspectives foregrounded here draw on new understandings of intersectionality as a key issue in addressing health inequity. They show how categories of difference such as race, gender and class intersect with broader social, economic, historical and political structures to shape experiences of health care. They allow us to look “upstream” (Clark et al, 2015) and to critically evaluate the virulent anti-asylum seeker rhetoric made by politicians and media that refugees and asylum seekers are “trying to take over”, are not “genuine”, are not using the “proper channels”.  They surface the often overlooked truth that the Geneva Convention — to which Australia is a signatory — provides people in fear of their lives with a legitimate and legal right to seek asylum. Intersectionality might allow us to engage in cultural safety, to see how our ‘selves’ intersect with the institutional, geopolitical and material aspects of our roles; to consider the investments and conditions that enable us to care and to interrogate the constraints and accountabilities that influence our practice.

Much of the history of critical nursing practice has focused on the “reflective practitioner” (Schön, 1983).  However, in the real world there’s rarely time to reflect and institutional demands often preclude reflective time. And reflecting by ourselves assumes we can be fully aware or conscious of ourselves and the social relations that we are a part of. This kind of deliberation cannot adequately address the messy unpredictable nature of nursing contexts.

We might need to start talking to each other again, working in partnership to take part in more socially engaged knowledge practices, where we recognise the limitations of our own knowledge so we are better able to work across difference. Nurses are already skilled at building relationships with clients. We need to extend our therapeutic alliances to families, communities, service providers and community resources. The ACN and nursing’s other professional organisations have taken up the challenge, speaking out against Australian policies and practices that impact on the health outcomes of detainees, asylum seekers and refugees — the secrecy provisions of the Australian Border Force Act of 2015 being a key example. What are our collective responsibilities now? As they have always been: to conduct ourselves with a duty of care. However, in this increasingly complex world, effective care is no longer a matter of caring only for the individual, but requires partnerships that transcend the boundaries of clinical practice, research, education, and political advocacy to work more collaboratively and improve the well being of those marginalised by our nation’s unhealthy policies.

 

References

Clark, N., Handlovsky, I., & Sinclair, D. (2015). Using Reflexivity to Achieve Transdisciplinarity in Nursing and Social Work (Chapter 9). In L. Greaves, N. Poole, and E. Boyle (Eds.). Transforming Addiction: Gender, Trauma, Transdisciplinarity (pp.120-136). London: Routledge.

Harrell-Bond, B. E (2002). Can Humanitarian Work With Refugees Be Humane? Human Rights Quarterly 24(1):51-85.

Jameton, A. 1984. Nursing Practice: The Ethical Issues. Englewood Cliffs, NJ: Prentice Hall.

Schön, D. A. (1983) The Reflective Practitioner: how professionals think in action London: Temple Smith.

My own experience of disaster: Cyclone Isaac 1982

The Kingdom of Tonga is made up of  170 islands, of which 36 are inhabited. Two-thirds of the population live on Tongatapu the main island. Cyclones occur once every 1.6 years on average.

Cyclone warnings were broadcasted frequently when I went to Tonga High School in 1982. The morning of March 3rd was no different, but this time we didn’t go to school. It was overcast and the wind had picked up. We had a lush tropical garden lovingly tended by my parents with sporadic assistance from their three daughters. The first thing we noticed which was kind of funny, is that it started raining pawpaws, then breadfruit and bananas which I found hilarious. Then it got less funny, banana trees started doubling over, branches started flying past, then sheets of corrugated iron, all the while it was raining hard. We had the sea in front of us and a lagoon behind us, we wondered what it would end. Our electricity supply disappeared and then our neighbours joined us as they were worried about flooding.

Cyclone Isaac was declared by the Tongan authorities to have been the worst disaster in Tongan history, because of the magnitude of the destruction of housing, public buildings and livestock (up to 95% in some
places). According to this shelter case study on disaster mitigation  public buildings were designed using seismic and cyclone codes from Australia and New Zealand, but these were not applied to private housing, so some house were built with poorly secured metal roofing sheets (explaining why sheets of corrugated iron had been flying past). What I remember most about that time, was how quickly we all mobilised collectively to clean up the mess and also how quickly international aid arrived.

 

The front of the house
The front of the house (Photo by Ruth De Souza, 1982).