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“Iconographies for Retirement” – By Pauline Garvey

GeorgianaMurariu31 October 2019

Author: Pauline Garvey

As part of the ASSA project, we are developing mHealth (mobile health) initiatives in order to address the needs of our populations. In our two field sites in Dublin we are engaged in developing social prescribing sites that can be accessed online, on smartphones, and as hard copies for those who are not comfortable with digital media.


Figure 1: One Dublin-based social prescribing site that we are developing.

Social prescribing is based on the recognition that a person’s health is improved by the degree she or he is embedded in social networks and cultural activities (see my blog December 2018). In many cases it involves a GP or counsellor writing a ‘prescription’ for a patient to attend a social activity that will embed a person in their community and enhance their health in mental, emotional and physical ways. In one pilot study, the Irish Health Service Executive described social prescribing as a service that:

“…helps to link you with sources of support and social activities within your community. Social Prescribing is for you if you feel that you need some support to mind your health and wellbeing, you feel isolated, stressed, anxious or depressed, you simply feel you need the service.”

This approach to health has been subject to quite a bit of media attention in Ireland this year and has been subject to several pilot studies nationally and internationally.[i] As part of this rising tide, there is now an annual international conference dedicated to social prescribing which is being developed in diverse countries from UK to the United States, Canada, the Netherlands, Singapore, and Finland.

The question for our team is firstly how can we develop a social prescribing site that enhances the lives of our research respondents? Secondly, how can an anthropological approach make a positive contribution to social prescribing more generally? Our approach is very much coloured by our methodology of anthropological ethnography and participant observation. This means that our insights emerge as the result of immersive participation in our field sites, building on the 16-month ethnographic fieldwork already completed. In developing a social prescribing website, we plan on continuing to work with our research respondents to understand how they use and engage with initiatives such as these.

The first issue emerged early when our informants expressed doubt about the iconography used to denote retirement.

Figure 2: One of the icons that our respondents objected to

For the people we work with, this icon seemed to capture an ageist expectation of what retirement should be rather than their actual experience of it. For example, one of my respondents jogged the 30 km home on the day he retired. Although this man’s level of fitness is not what I would describe as ‘average’, his perspective on remaining active is more in keeping with our respondents than the icon above (see figure 2).

As a result, we set about working with students from computer science in Maynooth University to create something more appropriate. As we work on developing iconography that better encapsulates the experience of our respondents, we realise that this is an ongoing iterative process that we will constantly revise as we launch our websites and work with our respondents in the years to come (see figure 1). Two alternative icons we are currently considering with respondents can be seen below.

 

Figure 3: Alternative retirement icons that we are currently considering with our research respondents.

 

References:

[i] https://www.irishtimes.com/life-and-style/health-family/what-is-social-prescribing-and-how-it-can-benefit-your-health-1.3840354

 

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.

The Challenge of Menopause

DanielMiller3 August 2018

Photo (CC BY) Daniel Miller

For a project concerned with health and mid-life, menopause is an obvious target. What specifically does an anthropological perspective add, first to understanding menopause and second to envisaging a positive digital intervention? One key anthropological component, which is the comparative perspective, will have to wait until the team completes its research, but from my Irish fieldsite there are many possible insights. The challenge is firstly that no two women have the same experience. Menopause can start in your 30s or 50s. It can be almost symptom-free or have dramatic effects, some of which may never end.

The anthropologist will focus on the way medical issues are inextricable from the social context. The effect can be on close relationships. As a pharmacist told me, Sometimes they come and say ‘I’m ready to kill my husband I think I’m going crazy’ very reassured when you say it could be the menopause”. Or women report that vaginal dryness makes it too painful to have sex. Women have told me that their mothers never mentioned menopause to them, or that they do or do not feel they can discuss the topic with their sister or close friends. Mostly they report that menopause is a topic that can only be broached through jokes. The impact might also be on wider relationships, such as to one’s work: “You might say to your colleague `could you just take over for a moment’ and then not explain why you would disappear, because you had a flush and you needed to remove yourself”.

Then there is the relation to wider medical authorities. Concerns about HRT or addictive sleeping pills may mean they prefer to consult complementary medicine rather than doctors. Knowledge seems to be a complete lottery, where some are well aware of the potential effects on bone density while others have never had anyone suggest this is something they might look into. Listening to women, within an ethnography, also alerts one to the considerable differences in perspective. One woman will give a feminist perspective about the need to rethink menopause as a celebration of a natural process, rather than merely a medical problem. While another, who is undergoing IVF and is desperate to have children, sees nothing to celebrate.

For us, the ASSA team, it is important that this same alertness to the social and wider context should manifest itself as the anthropological contribution towards delivering that will be of genuine benefit. One of the lessons from this research is that we need to see smartphone apps less as autonomous interventions and more as potential hubs. Different women will respond to different levels of information. There are those who are turned off by text and just want visuals, contrasted to those who want to read the medical journals. In my research so far, women have split equally between those who would prefer a discussion forum based on complete anonymity, to those who would only want to discuss these issues with people they can identity and feel some sort of relation to. In making relevant information more accessible all these factors need to be taken into account, but first and foremost comes listening to what a broad range of women say.

 

The digital divide in age-friendly Dublin

LauraHaapio-Kirk14 June 2018

Author: Pauline Garvey.

Age Action website[1]

 

Recognising that over the next 30 years the number of people in Ireland over the age of 55 will double and the number over 80 will quadruple, there are lots of initiatives dedicated to positive and active ageing in the capital city. In 2013 the Irish Department of Health published the National Positive Ageing Strategy which set out a ‘vision for an age-friendly society through the achievement of four national goals (participation, health, security and research)’[2]. Dublin City Council claims the city was the first capital in the world to adopt a city-wide approach to becoming age-friendly[3]. In order to do this the Dublin City Age Friendly Programme 2014-2019 tackles nine key areas that may negatively impact on older individuals[4]. Under a series of headings it commits to providing alternatives to sheltered housing (Home and Community); supporting older people’s engagement with social and community life in which they live (Social Economic and Political Life); helping people volunteer or work in their locality (Learn, Develop and Work); providing facilities to engage in sports and activities (Healthy and Active Living). It also aspires to make the public sphere more manageable for older people such as providing adequate seating and level footpaths (Outdoor Space and Buildings); ensuring that public transport is adequate for journeys that older people are taking and the pedestrian crossings are timed at the correct speed (Transport, Safety) and finally ensuring access to information, both online and off-line for older individuals (Information).

Over the course of my research I will look at some of these initiatives more closely, but for now I’m interested in exploring how people access information. It is here that the digital divide can be most striking: when smart and competent people find themselves grappling with digital technologies such as simple commands on smartphones and computers. For an ever-growing number of activities such as booking a flight or reserving a table at a restaurant one is required to do it online. One organisation that is working to combat digital exclusion is Age Action and I was interested to note that one route to signing up for computing courses is by filling out an online form![5]. What at first glance looks like a contradiction is in fact something quite different. The Age Action website is directed to friends and relatives because feeling excluded from digital media impacts whole families and networks of friends rather than solitary individuals. One’s place in a social network is continually reiterated through simple messaging such as checking in with kin or organising meet-ups, allowing people to demonstrate care as well as receive it. Of course the question remains, what about the people who need help getting started but have no one who will intervene of their behalf? For these, the digital divide remains an insurmountable barrier.

 

 

  1. https://www.ageaction.ie/how-we-can-help/getting-started-computer-training/sign-up
  2. http://www.dublincity.ie/agefriendlycity
  3. http://www.dublincity.ie/sites/default/files/content/HousingAndCommunity/Community/Age%20Friendly%20Charter-English%20A2.pdf
  4. http://www.dublincity.ie/sites/default/files/content/HousingAndCommunity/Community/Age%20Friendly%20Charter-English%20A2.pdf
  5. https://www.ageaction.ie/how-we-can-help/getting-started-computer-training/sign-up

Looking to the Future

Marilia Duque E SPereira3 March 2018

Author: Marilia Duque

By the year 2050, the Brazilian population over 60 years old is expected to grow from 24 million to 66 million[1]. Fortunately, my first impression of the District of Vila Mariana, in São Paulo city, where I have been conducting ethnography since January, is that there are already innumerable initiatives for the elderly, both public and private.

In addition to public health units, there is the AME-IDOSO for example, a centre dedicated exclusively to the care of people over 60, taking referrals from other health units in the city of São Paulo. It provides examinations, medical appointments and treatments, as well as activities such as dance classes. Just a few blocks away, you can find the Elderly Coexistence Centre (NCI), also subsidised by São Paulo City Hall. If you are 60+ and live in the Vila Mariana District you can join a large number of activities such as knitting and crocheting, fitness, circular dancing, senior dance, manual work, pilates, painting on canvas, chanting, memory games and rhythm dancing. I went there the week before the carnival. When I arrived, it was snack time. While one group were doing a dance class in the lounge integrated into a beautiful garden, another group were chatting and eating, all dressed up in traditional carnival ornaments. The worker told me that the menu takes into account the food restrictions and needs of the participants.

(CC BY) Marilia Duque

During this first month, I have already mapped five squares in the neighbourhood, all of them with gymnastics equipment, in another São Paulo City Hall initiative for people over 60 called “Longevity Playground: Happiness is Ageless”.

(CC BY) Marilia Duque

But if you keep walking you will also see many gyms offering activities for the elderly with special prices, not to mention Aqui Fitness, which has a program of physical activities developed by a geriatrician. And just a few minutes away, you can also exercise your mind and improve yourself; the Nossa Senhora da Saúde Parish offers an adult literacy course (20.4% of the population of Brazil over 60 is illiterate[2]), language classes and a Whatsapp course, especially for people over 60.

(CC BY) Marilia Duque

One of my ethnographic challenges is to investigate how the ageing population in the neighbourhood perceives these initiatives. Do they really work? Do they work for everyone? Could appearances be deceptive? This is an important point because Vila Mariana District is far from being a utopia. You can choose to see just the modern buildings that are rising everywhere among the two storey houses. But you will have some difficulty ignoring the Mario Cardin Community, a favela where more than 500 families live in precarious conditions, or the homeless people living on the streets.

(CC BY) Marilia Duque

But for the moment let us take this apparent wealth of amenities at face value. Actually, this raises a rather different question. Do Brazilian people have to get old before they experience something approaching the support and solidarity of an egalitarian state?

 

 

[1] http://www2.camara.leg.br/a-camara/estruturaadm/altosestudos/pdf/brasil-2050-os-desafios-de-uma-nacao-que-envelhece/view

[2] https://agenciadenoticias.ibge.gov.br/agencia-noticias/2013-agencia-de-noticias/releases/18992-pnad-continua-2016-51-da-populacao-com-25-anos-ou-mais-do-brasil-possuiam-apenas-o-ensino-fundamental-completo.html

What Africa Can Do for Technology

Charlotte EHawkins29 January 2018

The Economist recently published an article called ‘what technology can do for Africa’. The article covers key discussions around the potential of technological development in sub-Saharan Africa, but falls into pitfalls common to the subject. Determinism is evident in emphatic statements like: “countries are on the cusp of a tech-driven transformation that is already beginning to make people healthier, wealthier and better educated at a pace that only recently seemed unimaginable”. Mobile phones are top of the list, said to have made ‘leaps’ possible. This pervasive image of Africa ‘leapfrogging’ stages of ‘Western development’ with mobile phones in order to improve health, education, communication and business is certainly compelling. But in reality, many digital development practitioners are increasingly skeptical of this utopian ideal, said to be Western-centric (Suchman, 2002, 2011; Tunstall, 2013; Nussbaum, 2010) and to result in unsustainable ‘pilots’ (Holeman, 2017; Huang et al, 2017) which can leave new gaps in their wake.

The Economist article attempts to acknowledge this critique by countering optimism with evidence that the region’s infrastructure is increasingly “sluggish”. The below map of Africa is entitled merely ‘Ill-equipped’, and shows limited access to electricity and mobile phones across much of the continent; in Uganda, 25% and 41% respectively. Besides a few tech hubs, technological advancement and education are unfavourably contrasted with that of Silicon Valley and “the rich world”, from which “Africa risks falling even further behind”; implying a sense of failure, and of technology as a global race.

Through 16-months ethnography in Kampala, I hope to find a different middle ground with a more considered optimism towards ‘what technology can do for Africa’, or instead, ‘what Africa can do for technology’. In the article, Liberian medic Dougbeh Chris Nyan is poignantly quoted to say: “We are forced to be inventive to become masters of our destitution”. In line with Katrien Pype’s exploration of the meaning of technological inventiveness in Kinshasa, ‘smart’ solutions are built around constraints and ‘from below’ (2017). For example, mobile money, “the bank account in your pocket”, a pertinent example of technology adapted to African requirements.

How do people in Uganda appropriate mobile phones and mHealth to accommodate their preferences and needs? During my fieldwork, this question will direct an enquiry into the active role people take as users of technology. As evident in the pilots which do scale and survive, initiatives must begin and meet with sociocultural realities.

– Charlotte Hawkins

References:

  • Holeman, I. (2017) Human-Centered Design for Global Health Equity.
  • Huang, F., Blaschke, S., Lucas, H., 2017. Beyond pilotitis: taking digital health interventions to the national level in China and Uganda. Glob. Health 13.
  • Suchman, L., 2011. Anthropological Relocations and the Limits of Design. Annu. Rev. Anthropol. 40, 1–18.
  • Suchman, L.A., 2002. Practice-Based Design of Information Systems: Notes from the Hyperdeveloped World. Inf. Soc. 18, 139–144.
  • Pype, K. (2017) ‘Smartness from Below’, in What do Science, Tehcnology and Innovation mean from Africa? eds Clapperton Chakanetsa Mavhunga. MIT Press
  • Tunstall, E. ‘Decolonizing Design innovation: Design Anthropology, Critical Anthropology and Indigenous Knowledge’. In Gunn, W. Otto, T. Smith, R. (2013) Design Anthropology: Theory and Practice. Bloomsbury Publishing, London.

Second Life

DanielMiller11 July 2017

We had intended to only start blogging in October when our project actually starts. But the inclusion of a special section in this week’s The Economist (8/7/2017) on the `young old’ is too great a temptation to resist. There are three main components to our forthcoming project. The ethnography of the smartphone and the development of mHealth are two foci. But our foundation is in re-thinking the experience of age for those who can no longer be designated at either young or elderly, i.e. those between the ages of 45 and 70. For me, an interest in how older populations appropriate technology had grown partly from previous projects. When Facebook started to become ubiquitous I was arguing that in the long-term I could see this as more of an older person’s than a younger person’s innovation. My logic was that this was in essence a platform for social communication, and in most societies studied by anthropologists the traditional ‘burden’ of active social communication had been that of older women rather than younger men, especially when it came to keeping up with what is happening in families. Our Why We Post project has shown how in many regions of the world, this kind of intra-family communication is the core to Facebook usage. When I first suggested this alignment, people thought I was insane since Facebook was assumed to exist only for teenagers. But in The Economist the same point is now being taken seriously.

The Economist is mainly concerned with the economic implications of longevity, but for our project there is a real intellectual challenge in researching how living longer than previous generations changes peoples’ understanding of themselves, but also ultimately of the meaning and purpose of their lives. We want to get involved in the practical implications, as in the rise of mHealth, but first we want to compare the experience and meaning of ageing for this demographic across our 12 fieldsites.

The Economist also has a leader asking for a new category or label for this age group. Their own proposal of ‘pre-tired’ is fun, but is probably not intended to ‘stick,’ to the degree that a category such as ‘teenagers’ has. In a preliminary discussion with the team I had proposed the term ‘Second Life’. I know this was the name of a popular computer game but that seems to have faded somewhat and I think it is possible to re-use the term. The reason for this choice is that it seems clear that many people in their fifties and sixties actually want to stay in work, but not necessarily in the work they have done so far. Many would like to return to education, but to study something different. Those who were working when they were parents and were therefore unable to spend as much time with their children as they had wanted to are more likely to want to be active grandparents. Whereas perhaps those who were full-time parents are less likely to be as involved in grand-parenting. In other words, people realise in their fifties that they may have done thirty years of work, but then may have another thirty active years to do something else. So the idea of Second Life, suggests that people now have the opportunity to, as it were, start again, based on the experience and the mistakes of life so far.