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Coronavirus and social isolation: 16 insights from Digital Anthropology

GeorgianaMurariu20 March 2020

Source: Unsplash https://unsplash.com/photos/tDtwC11XjuU

Blog post by ASSA (Anthropology of Smartphones and Smart Ageing) team

We recently conducted nine 16 month studies on the use of smartphones by older people, which is the main source of insights here. You can read more about the project here.

This is a summary of insights from our previous research intended to be on benefit for individuals or institutions considering  digital health initiatives for older people. It is a preliminary list and we hope to deepen our contribution through subsequent blog posts.

Additional insights are also drawn from Daniel Miller’s The Comfort of People (Polity, 2017), a book about the social universe of hospice patients, which includes recommendations for how to use new media to assist isolated older people to maintain social relationships.

1) USE EXISTING APPS

Our research found that older people are often very reluctant to use a new app. When trying to assist older people in using online resources it is best, if possible, not to suggest new apps. Find a way of achieving your aims through an app they already regularly use, such as WhatsApp.

2) EMPATHY

Social isolation has been a common experience for older people, especially those who have lost a partner. Isolation is particularly common in the UK. One result of this virus is that people of all ages are now experiencing isolation. They may thereby gain greater empathy with the lived experience of older people living alone or in isolation.

3) POLYMEDIA

Our research shows that today each individual has particular preferences for how they prefer to communicate. For example, a person might be fine with the webcam, but only if you text first so that they are prepared. It is important to learn about an individual’s media preferences and then respect these.

4) FORUMS

The hospice research found that people who are struggling (in that case it was mainly cancer patients) find forums of considerable value. But they divided into two equal groups. One group only wished to exchange such intimate problems when the forum was entirely anonymous; the other was only comfortable communicating with identifiable others. We need to develop and proliferate both kinds of forums.

5) FREQUENCY, NOT CONTENT

For many older people what matters is not what is contained in communication, but its frequency. Knowing that people are interested enough to make some kind of contact is far more important than anything those people actually say.

6) THE FINE LINE BETWEEN CARE AND SURVEILLANCE

This point applies to personal relationships, where older people may appreciate being in constant contact, but care greatly about autonomy and dignity. It also applies to the macro level, as where some people regard China’s response to the virus as unacceptable authoritarianism, and others see it as an entirely justified expression of how a state cares for its citizens.

7) SMART FROM BELOW

Most policy suggestions are implemented by policy experts in a ‘top-down’ manner, thereby affecting the bulk of the population, but the widespread use of digital technologies produce a democratising of creativity and ingenuity. Anthropologists seek to learn from the creative responses of ordinary people, accumulate examples (e.g. https://covidmutualaid.org/) and use these to educate others.

ASSA will soon be publishing a 150-page manual of protocols on how to use WhatsApp for health, created by Marilia Duque, who is a researcher on our team. These are not her own ideas, but best practice examples gathered from 16 months of observing how older people in Brazil used smartphones for health purposes. We need to establish platforms where people can share what they are learning from the creative response of ordinary people.

8) CARE AT A DISTANCE

Digital technologies have made the practice of care at a distance commonplace. This occurs in different ways. For example, working with older people in China and Japan, we found they have shifted to much greater use of visual communication, such as stickers and short videos, as a way of expressing care. These people found it easier to convey affection through these means, rather than through more conservative traditions of face-to-face encounters.

9) WHATSAPP SUPPORT

Today many people form WhatsApp groups with family and friends to support isolated people or patients. This is highly effective. So we need to ensure that everyone is aware of its benefits. Marilia Duque is advocating a system of `WhatsApp Angels’ in Brazil in response to the virus. As it happens, Whatsapp has already created a ‘Coronavirus Information Hub’ which includes examples of how to use the app to stay in touch with loved ones or seek up-to-date health information on the virus. The Information Hub can be accessed here.

10) WEBCAM

In a phone call, older English people traditionally tend to say they are fine, even if they are at death’s door. There are many advantages to connecting via webcam, which allows one to see how a person is actually doing. Many might find it helpful to have their webcam switched on even when people are not actually talking, since this is more akin to co-present living together.

11) NON-TECH-SAVVY ELDERLY PEOPLE

Coronavirus is about to cause a crisis for those elderly people who may never learn to use smartphones, as access is stopped for visitors to care homes. A helpful device is the Amazon Echo Show, since it can conduct webcam conversation through simple voice commands such as ‘Echo, videocall Mary’. Set-up requires another person using an Alexa App and is quite complex but the technology does work.

12) FACEBOOK

Facebook has shifted from a young person’s platform to use more by older people and community groups. At this point, the main advice is for young people to remain on Facebook where they will be able to share more family information, jokes, and other material with those older people.

13) CONFIDENTIALITY IS LESS IMPORTANT

The hospice research mentioned above suggested that, so far from protecting people, an obsession by institutions with privacy and confidentiality has become a major source of harm. People who are ill were more concerned to ensure that relevant people were informed about their condition, rather than that strangers might also know about their condition. Privacy is important, but tight controls over data because of concerns over litigation can cause considerable harm to patients.

14) PATIENCE AND PATIENTS

Older people may want and need to learn about how to use smartphones and similar skills, but they mainly reported that young people do not help teach them. They become irritable and impatient and take the phone away to make changes. With social isolation it will become even more important to help people learn to do things for themselves.

15) KITEMARKING

Googling for health information is now a ubiquitous part of how people respond to illness or the fear of illness. Users, influenced by commercial sites or scare stories, can end up more anxious and misinformed. Kitemarking has improved with the foregrounding of more authoritative sources and is promising to do more. Google have already implemented this, prompting UK-based internet users to consult the WHO and NHS pages when the term ‘covid 19’ is entered into Google. However, Google health enquiries are still often headed by commercial and sponsored sites.

16) A GLOBAL EXPERIMENT

Right now, the world is embarking upon a vast global experiment, by default: a massive shift of education, work and sociality to online. This is an important time for digital anthropology to try to help assess any associated problems that arise from these strategies, as well as any long-term benefits.

Nurse navigators and WhatsApp: an example of ‘smart from below’

Alfonso ManuelOtaegui8 December 2018

Photo by Alfonso Otaegui

Within the scope of the project Anthropology of Smartphones and Smart Ageing (ASSA), we are committed to work collaboratively with a local mHealth initiative, or any initiative that will improve the access to healthcare or the wellbeing of the populations among whom we are carrying our fieldwork.

At the beginning, before even starting my fieldwork, I envisioned this initiative as the creation and implementation of a bespoke mHealth app, which would respond to a necessity observed in the field. This approach implied spotting a gap in the site –a need not yet addressed but noticed by the ethnographer– and creating an app which would fill that gap. It was certainly a top-down implementation approach: I would give the users something they needed but were not aware they needed.

After a couple of months, I realized it would be wiser to simply describe an app people already used in a creative way, and bring this local idea to another place, where this idea could be helpful. This approach, which could be described as ‘bottom-up’, implies acknowledging the creativity of local populations in the adoption of communication technologies, what Pype (2017) names ‘smartness from below’. With the same aim of bringing good ideas from one place to another, we have also started in our team to build up a list of ‘best practices’ in healthcare throughout all of our field sites.

With this aim in mind, I will spend the last six months of my fieldwork in Santiago doing ethnography at an oncological center in a public hospital. This particular hospital is the only public one in Santiago having implemented a ‘nurse navigator’ model of healthcare (Devine 2017).

The navigator nurses work as mediators between oncological patients and the medical and bureaucratical system of a public hospital in a low-income area. Cancer treatments mean two complexities for the patient: the medical complexity of the treatment and the bureaucracy of the public health system. Different cancer treatments can have several effects on different systems of the body, so managing the treatment implies handling a lot of information. The treatment is based on a series of procedures (image exams, chemotherapy sessions, blood tests, etc.) which require prescriptions and appointments, and have to be carried out in a specific order, and in certain amount of time (otherwise the probabilities of success decline). Navigator nurses actually manage the treatment for the patient, as they have the expertise to deal with both kind of complexities.

According to oncologist Bruno Nervi, president of the foundation Chile sin Cancer (‘Chile without cancer’), there are around 100 oncologists in Chile, when 400 are needed (55.000 people are diagnosed with cancer every year) (‘La Fundación Chile sin cáncer (…)’ 2018). Given the high number of patients, oncologists do not have the time to explain all the details of the treatment. The nurses working at the chemotherapy room face the same problem, as they try to fit in as many patients on a day as possible. The nurse navigators then, fill in this gap by educating the patient on the details of the disease and its treatment and mediate between the patient and the complex bureaucratical system of public healthcare in Chile. They make all the appointments for exams, blood tests and the like –which requires a lot of paperwork– and stay in touch with patient in case this has any doubt or question. These dedicated nurses constitute a human factor in healthcare that no app can replace. The nurse navigators, however, do use an app that is the most commonly used messaging app amongst patients: WhatsApp. According to the navigator nurses, WhatsApp gives them the chance to use various means of communication depending on the particularities and necessities of every patient: some prefer a phone call, some other need to see the info written in a text message, other will be reassured if they see a picture of the prescription or an exam order, some need an audio message they can listen to several times in order to understand the meaning (most of the patients are low-income people with low levels of education). Besides, nurse navigators are available for the patients for any doubt or question they might have. These nurses are there for them, to answer their questions and to comfort them, as the treatment and this relation of distant care can last for years.

Daniel Miller, principal investigator of the ASSA project, recommended in his last book ‘The Comfort of People’ on hospice patients and the use of new media, that it would important to create a patient/carer charter of new media use (2017: 218). The usage of WhatsApp by these nurse navigators actually follows a protocol which developed out of their experience in the last couple of years. I will attempt to describe this protocol and app usage and build up a model. I really hope it will be possible to bring this locally developed good idea to other public hospitals in Chile.

References

Devine, A. (2017, April 3). The Nurse Navigator: A Patient’s Compass On The Healthcare Journey. Retrieved from https://nurse.org/articles/nurse-navigator-career-path-salary-job-description/
La Fundación Chile sin cáncer y su contribución para cambiar la historia del cáncer en Chile. (2018, October 15). Retrieved from https://www.uc.cl/es/la-universidad/noticias/31765-la-fundacion-chilesincancer-y-su-contribucion-para-cambiar-la-historia-del-cancer-en-chile
Miller, D. (2017). The Comfort of People. Cambridge: Polity Press.
Pype, K. (2017). Smartness from Below: Variations on Technology and Creativity in Contemporary Kinshasa. In C. C. Mavhunga (Ed.), What Do Science, Technology, and Innovation Mean from Africa? (pp. 97–115). Cambridge, Massachussetts: The MIT Press.