X Close

ASSA

Home

Anthropology of Smartphones and Smart Ageing

Menu

‘If you are old, you invented the Internet’: A tribute to a senior geek

Marilia Duque E SPereira22 October 2019

I felt insecure about accepting an offer of website hosting from Dudu Balochini, who suggested we host the two websites we had developed together on his server at no cost. I asked him: “But what if you die?”. I was referring to my access to the servers, but he thought it was about his age since he was almost twenty years older them me (I’m 42). He then challenged me: “What if you die?” And that was how we laughed together and moved on. The first site we published together answered a need from the Center of Ageing Studies located at UNIFESP Medical School. Their researchers monitor the elderly population of a neighbourhood in Sao Paulo, and their studies include investigating the impact of physical activity on ageing. One of the interventions they made was to map out opportunities within walking distance for older people to exercise. This mapping was manually adapted to the address of each patient – a herculean task. But an informal survey showed that 70% of program-assisted seniors have smartphones. I had this information in mind when I met Dudu for a coffee. “Do you think we could make these activities accessible through Google Maps based on people’s location?”, I asked him. And he just said “I already know how to do that. I need two hours”. Twenty-four hours later, he produced the site we called Get Up and Go: nearby activities for the 60+. “I used the Store Location feature in WordPress, but it took me a while because it was blocked for developers from Brazil”, he apologised as though I thought he was late.

The second site is part of my delivery for the applied side of the ASSA Project – Anthropology of Smartphones, Smart Ageing and mHealth. With an ethnographic approach, I observed how WhatsApp was used for health purposes in Sao Paulo. I mapped the best practices and organised them into a set of protocols for communication within hospitals and clinics. I also developed a second set of protocols addressing nutritionists (obesity and being underweight are both health issues among older people in Brazil). Both materials are open-access and should be available for download. That is why I needed a website to publish them. This time, Dudu didn’t develop the website for me. “You’re going to become a SeniorGeek”, he told me. SeniorGeek is an initiative for digital inclusion of seniors created by him. At presentation events addressing older people, Dudu tried to demystify technological themes like Artificial Intelligence, Blockchain and Chatbots. He believed older people should know about those things or they would be cut off from conversation with children and grandchildren and, moreover, with society. Dudu also believed he could enable seniors to become digital entrepreneurs through courses that teach how to build a website, or an e-commerce or a blog. This is how I became his student. By myself, with the autonomy he wanted all seniors to achieve, I developed and published my WhatsApp manuals at http://www.saudeeenvelhecimento.com.br. In my field site, entrepreneurship gains strength among older people as a means of reintegration into the labor market. This is a consequence of the desire of many to remain productive but it is also their way to respond to corporate ageism. Dudu himself used to say he lived in a limbo: too old for the market, but not a “legal” senior yet.

Dudu was also a public figure. He was often in the media, giving interviews about the relevance of digital inclusion for seniors. At 58, he used to say, “If you are old, you invented the Internet. The problem is that people accommodated and forgot about it”. And he has a point. We just have to remember that Bob Kahn and Vint Cerf, creators of the TCP / IP protocol that enabled the Internet, are now aged 81 and 76 years old. However, ethnography showed me that this detachment from technology was also linked to retirement, when access to technology and needs in daily life change (Selwyn, 2004). Even so, Dudu’s speeches were inspiring and older people felt more confident because of him. Dudu died one week after I left my field site. An abrupt heart attack. On the one hand, he has achieved the death my informants desire the most: a death without illness or disease. I have written before about how my informants do not fear death. On the contrary, they see death as natural and even desire it when they think of the prospect of a future lived with physical, mental or financial limitations. On the other hand, it was an early death. Dudu was gone when he began to experience the purpose of life. I say experience because, among my informants, there is a feeling that the meaning of life is not something that can be explained by past achievements or by spiritual convictions. Therefore, they abandon philosophical reflections on the subject to focus on the present: they live today with purpose, filling daily life with pleasurable activities and, if possible, positively impacting the lives of those around them. Dudu brought these two accomplishments together in an intense agenda of events and courses.

And it was precisely the technology Dudu was so enthusiastic about that mediated his farewell. The news of his death spread via WhatsApp and was shared from group to group, giving rise to dozens of messages. Information about his funeral was also shared throughout the night, as well as information about the seventh day mass. For this last meeting, friends used WhatsApp again to prepare a last tribute. They have the idea to reproduce the “uniform” worn by Dudu, a black T-shirt, with the SeniorGeek logo. And during the days leading up to the mass, they spoke about how this production was made feasible all through their smartphones, as Dudu would like. The mobilisation was properly registered. And the pictures dominated social media again, now accompanied by the text “We are all senior geeks”. Dudu’s original WhatsApp group for his SeniorGeek initiatives was deactivated. A new one named “Senior Geek Connected” was created instead. It’s still a place where older people can find information about technology and new learning opportunities, keeping Dudu’s original idea alive. For him, above all, SeniorGeek was a manifesto against the invisibility of older people, something he believed only technology could solve.

 

 

 

 

Selwyn, N. (2004). The information aged: A qualitative study of older adults’ use of information and communications technology, Journal of Aging Studies, 18, 369–384

 

50 colours of menopause – reframing the ‘age of despair’. By Maya de Vries and Laila Abe Rabho

LauraHaapio-Kirk30 September 2019

Authors: Maya de Vries and Laila Abe Rabho

Photo (CCBY) Maya de Vries. Activity at the senior’s club: colouring pine cones.

Right from the beginning of the ASSA project, one of the main topics that we discussed was menopause. Although menopause is less of a taboo, and people talk about it much more in the al-Quds field site compared with some of the other ASSA sites, it took a us a while to be able to speak with informants about this sensitive topic. We discovered that for many women speaking about the physical and mental ramifications of menopause is still not easy to do and they tend to be shy and even embarrassed by it. It was only recently, after a year spent at the field site that gathering information about menopause became easier, mainly because women felt more comfortable to open up.

Research about menopause in al-Quds is rare. However there is some research about this issue focusing on the West Bank. In the article Age of despair or age of hope? Palestinian women’s perspectives on midlife health (Hammoudeh et al., 2017), authors depict the perception of menopause among Palestinian women in the West Bank who were born between 1960-1975. They clearly say that they had no access to Palestinian women in Jerusalem due to political and security problems entering Jerusalem from the West Bank.

The term used in Arabic in medical literature and discourse to describe menopause in the West Bank and in al-Quds is the ‘age of despair’ (sin al-yaas). However, in Hommoudeh’s article this term was unpopular with the women interviewed, and they preferred not using it. Similarly, in al-Quds, women that we spoke with in Dar al-Hawa, do not like to use this term. They are familiar with it, but do not wish to use it when talking about themselves, since it is not describing them correctly. The word despair is not relevant for them and perceived as negative, whether they are married with children, widowed, married with no children, or never married. They simply do not see themselves as in despair; for them it is very strong word, that does not describe their daily life.

The women we interviewed knew that they are in their midlife, but midlife for them means much more than just menopause, which carries negative associations. Many women articulated a positive view about midlife and ageing as a natural process that is part of life. Midlife, is considered to be an age of peacefulness and wisdom in the Holy Quran. The ‘age of despair’ is not mentioned; the term to describe older people is ‘old in years’ (Kbar fi al-Snin or Sheikhoukha, referring to old people, but they tend to see their age as an advantage because of increased life experience.

While talking with the women in al-Quds we found out that they talk about menopause in private and intimate situations such as meetings with girlfriends or with other women from their family. In such occasions, they talk more about the various physical symptoms characterising this age, such as – hot flashes, tension, incontinence, lack of sleep and more, and less on the mental issues that might appear. Some said that they were sure that these symptoms will pass with no need for medical treatment. They thought menopause is natural thing, and temporary. What was interesting to hear is how they refer to the term ‘menopause’, and what are the alternatives they are using instead.

In Yasmin’s (42) interview she referred to menopause as the ‘safety age’, when there is no chance to get pregnant.

yes, I have heard about it, there is another term that is used as an alternative to menopause and it’s the safety age. I know many women relatives and friends that reached this period of their life, but they never said that they were going through it (menopause). I think that this term is wrong, because there is no age that stops women.

Abeer (58) called menopause in a different name, considering it as ‘maturity age’, while referring not just to physical consequences of menopause, which are usually negative, but also to a better self.

I have been through the menopause period, I consider it maturity age, in this period women feel that they are able to take decisions by themselves, she feels that she is strong, she lives her life the way she wants, before the menopause her life was different.

Tagreed (60) sees menopause in contrast to what it represents. For her, the role of the women as grandmother is significant:

I don’t know, maybe when women reach this period her role in life ends, on the contrary, I believe that they are wrong because in this period her role becomes even more important than before, she takes care of her grandchildren, her children get married, she takes care of everything, and all the family depends on her. They think that if her period stops, that she is no longer able to become pregnant, her role in life ends. In contrast, in this period she takes care of her grandchildren, and her children depend more on her.

Tentatively, we can say that the term ‘age of despair’, is no longer relevant, and the concept of a novel, ‘golden’ prestige age is rising now. Our guess is that there are plenty of reasons for this shift, mainly because medicine is progressing and leisure activities are more commonly pursued. We will continue exploring how the digital environment impacts on this change; this still is an enigma for us, as many of our informants are not using digital devices, or health apps heavily. Some do not even carry a smartphone.

Interestingly, just as the term ‘menopause’ is being reframed, the same is happening also with the term ‘old’, as many in al Quds refrain from using it as it might be considered insulting. Many times, we see the word “seniors” instead of old, switching the word out of respect. A small example of the change in discourse can be seen in the new WhatsApp group opened two weeks ago by the coordinator of the seniors’ club under the name ‘The group of the golden age club’. The previous WhatsApp group, which is now being abandoned by its members, was called ‘The group of the older people of Dar al-Hawa’. The ‘golden’ age highlights the possibilities this age, despite menopause, can offer. Is this reframing simply concealing what is really happening in this age? Or due to various changes in the modern world, is ageing is coloured in gold? So far the al-Quds’s field site tells us that ageing is changing, and if you are financially secure, yes – you can experience the ‘golden age’.

 

 

Digital Social Participation: Cases from Milan

ShireenWalton9 September 2019

Photo (CY BY) Shireen Walton

Social participation is among the most significant factors linked to health and wellbeing later in life. As a variety of studies have shown, loneliness (both social and emotional [i]) is one of the most pressing issues of ageing. Individuals, of all ages and backgrounds seek roles, a sense of belonging and purpose, but these needs becomes particularly pertinent following retirement, in ‘empty nest’ contexts of family members having moved away, or in conditions of limited physical mobility

One question we have been exploring in the ASSA project is what might be the significance of digital social participation, or rather, social participation that is facilitated by smartphones and digital practices. My ethnographic research in one inner-city neighbourhood in Milan reveals how smartphone practices play a significant role in facilitating social participation amongst a range of individuals and groups, helping to combat issues associated with loneliness and physical/social isolation, via on– and offline practices.

To illustrate with a couple of examples.

Ugo, 75 is a retired engineer lives with his wife, Anna, 70, a retired schoolteacher, on the 5thfloor of an apartment building where they have lived for the last 30 years. Due to a severe spinal condition that affected the use of his legs, Ugo hardly ever leaves the house. A combination of technologies, the Internet, historical fiction books, and daily interactions with his wife make up his social world where he spends the days in a wheelchair at home. From the moment he wakes up in the morning until he goes to bed, Ugo is connected to the Internet via the house WiFi. Ugo uses his smartphone primarily for communication with the wider social world – he wears his smartphone round his neck in a well-worn, knitted phone case that Anna had knitted for him a few Christmasses ago. Through WhatsApp, Ugo enjoys receiving photographs from family and friends. At one point, Ugo was added to a WhatsApp group of the apartment building that was set up by one of his neighbours, a Peruvian woman called Angela, as a communication porthole for residents of the building. Before long the group transformed ‘from below’ into a forum of sharing, posting, commenting, celebrating, via emojis, memes, screenshots, even poems. While Ugo is not active overly himself on the group, the messages he receives on his phone, in addition to wider notifications such as the news, bring him a certain pleasure throughout the day, making him feel connected to a certain buzz of being-in-the-world where his physical conditions had otherwise gradually removed him from.

Ugo also uses WhatsApp to communicate with his (family) doctor.  In one instance, Ugo had a rash that had developed on one of his legs. The first thing he thought of to do was to take a photograph of it on his smartphone and send the image to his doctor on WhatsApp. This led to a kind of informal digital consultation between the two. “We are close”, Ugo explained. “He (the doctor)is like a son or nephew to me. With WhatsApp we are like family – I know he is never far away if I need anything, which comforts me. From time to time he will ask if he can pop round to see me on his way home.”

In a different example, Rosalba, 69, originally from the region of Abruzzo in central Italy is a retired secondary school teacher. She lives with her husband (75), a retired electrician, and their dog. Rosalba found the adjustment to full-time retirement a difficult transition, and missed the sociality of her professional role and buzz of school life. She soon sank into daily routines within the home; household chores, shopping, cooking for her and her husband, a few outings. But without real purpose, Rosalba found herself drifting through the days and weeks. Before long, her home space became a kind of benign ‘prison’, and she found herself feeling suffocated by emotional isolation and loneliness. One of Rosalba’s former colleagues from her school who she sees regularly at the supermarket recommended that she should come along to a women’s choir that meets once a week in the neighbourhood. Rosalba found aspects of the choir refreshing and stimulating; the multi-cultural and cross-generational aspect resembled what she had experienced at work at the school. The choir’s WhatsApp group, in particular, was extremely active. The women share photos, videos, song lyrics, emojis full of hearts, flowers, shooting stars, laughs, cries, thumbs up and down, amid a broad repertoire of digital-visual expressions of emotion. After a year, Rosalba found that she had discovered a new lease of life through the choir and its associated fora of sociality, including the WhatsApp group. The stream of messages that flows between the women and the immersive, ‘affective community’ it forms, comforts Rosalba in her day-to-day life, and she became to feel less alone throughout the days. Retirement now feels like something Rosalba can participate in and even shape, as she begins to carve out spaces for herself and her need for collectivity. She has developed her singing voice in expressing powerful and politically and emotionally-loaded lyrics of defiance, human solidarity, sisterhood, in a range of languages and dialects, and this empowerment appears to have seeped into other aspects of her life, including how she participates more actively in her social relationships, and in trying out new hobbies such as walking groups. Ageing and retiring with smartphones has been a gradual but creative and rejuvenating experience for Rosalba, and digital communications have facilitated and boosted her social participation.

For others in the neighbourhood, digital social participation can be an important way of participating in community life for other reasons. Angela (45) is from Lima, Peru. She lives with her husband and their 12-year old son in the same apartment block as Ugo mentioned above, working as a part-time teaching assistant in one of the local public schools. Angela describes her life with her family as ‘quiet and closed’. She is not particularly sociable or confident in public settings, and some of this she attributes to a difficult background and upbringing in the low-income neighbourhood her family lived in in Lima. She is particularly concerned about street crime and violence and the safety of her son growing up in Milan. Although she is reasonably active during the day between her job, the food shopping, and taking care of the family at home, Angela avoids going out at night. Through digital forms of engagement however, Angela has enhanced her social participation in the community in a manner she feels comfortable with – from the comfort and safety of her home. She participates enthusiastically on the apartment block WhatsApp group she set-up for neighbours in the building – sharing friendly messages and greetings on festive days – and is a member of various groups tied to her son’s school such as parents’ groups on WhatsApp and Facebook, which keeps her both informed and feeling involved. When one of her Peruvian friends recommended a weekly women’s sewing group, Angela joined and became an active participant on the WhatsApp group. The social worlds contained within Angela’s smartphone constitute some of the main sources of Angela’s present social life. Her social participation is both offline and online, but is most frequently played out via the smartphone.

Engaging socially in digital forms can be important in a variety of contexts and at any age. Although the politics and practices of inclusion/exclusion via digital practices are far from simple matters, requiring delicate critical and contextual attention, my research in Milan highlights how smartphone-facilitated sociality can modulate experiences of loneliness, isolation and/or social exclusion amongst a range of people, including older adults and migrants in the city, forming an overall central part of how socialities are crafted in this context.

References:

[i]  De Jong Gierveld, J. & Van Tilburg, T. (2006). A 6-item scale for overall, emotional and social loneliness: Confirmatory tests on survey data. Research on Aging, Vol. 28 (5): 582-598.

 

Pandora turned 70 and she just opened the box again. By Marília Duque

LauraHaapio-Kirk3 July 2019

Photo (CC BY) Marilia Duque.

Author: Marilia Duque

I am packing up to leave my field site after a 15-month ethnography with older people in Sao Paulo. One thing I learned is that a smartphone is not smart by default. Most of the time, especially for older people, a smartphone could be a stupid little thing that releases a new set of problems they now have to deal with, just like a Pandora’s box.

The character of Pandora can be perfectly represented by a 70-year-old lady I met who just received her box in the form of a gift from her son. This pandora’s box contained many gifts: a telephone, camera, calendar and computer and they were all hidden inside a Samsung Galaxy phone. Pandora’s husband warned her: “You should never turn this on. We are not supposed to steal technology from the youngsters”. Pandora then left the smartphone inside its box for weeks until she found out she was not invited to her old school annual reunion. The explanation they gave to her? “It was all set up through our WhatsApp group, dear”. In a mix of rage, sorrow and curiosity, Pandora immediately opened her smartphone’s box and turned it on.

As in the Greek myth, our Pandora also released some plagues and devils she now has to deal with. In her case, she faced fear, low self-esteem, and anxiety. She first experienced fear of breaking the device, fear of being charged for something she was not using, and fear of erasing something important, like the pictures of her youngest grandson’s swimming competition. She then experienced a lost of self-esteem because her smartphone’s display was set to sleep after just 30 seconds of inactivity and she just didn’t have the proper time to think about what to do before the screen turned off. And when she asked her son for some help, he simply had no patience to explain to her what was happening. Instead, he took her smartphone from her hands, reset the sleep mode to 5 minutes and gave it back to her saying “it is intuitive, even children are supposed to learn how it works”.  Pandora still doesn’t use her smartphone to its full potential, but a friend from her church has downloaded WhatsApp for her. She has finally joined her old school friends’ group and also her charity group, her meditation group and her family group. Now Pandora experiences anxiety because she has to manage so many messages that just keep coming without interruption. Pandora doesn’t understand that the connection is on 24 hours a day, 7 days per week, but she can choose not to be.

Curiosity was what made Pandora open her smartphone’s box and turn it on for the first time. But it is also curiosity which is the only thing that can save her. With curiosity (and with a little help from her friends), Pandora can dig deeper into her smartphone until she finds a solution – ‘hope’. It is hope that was left remaining in Pandora’s box. She will make ten mistakes for each thing she does right. She will be annoyed because she can enlarge the font size and the display size of her smartphone, but this will disrupt her WhatsApp screen lay-out and she will feel lost again. Even so, with time, she will become more confident to try new things and make new mistakes and learn with them. In doing that, Pandora will discover that one more gift was left inside her smartphone. Pandora will finally experience the smartness of her smartphone. A smartness that is only achieved in practice, when the smartphone provides a solution for someone’s need or desire.

Fear, low self-esteem and anxiety will still exist. But Pandora won’t have time to pay much attention to them. She is now checking Google Maps for the easiest way to go to a museum with her friends. She is deciding to take an Uber so she can improve her English with Duolingo during the trip. She is experiencing that fraction of smartness that makes her think that her smartphone was actually a gift from the gods to mankind. A gift she had the curiosity to open and the courage to keep it on.

Enfermeras de enlace y WhatsApp: un ejemplo de ‘inteligencia desde abajo’

Alfonso ManuelOtaegui11 December 2018

Foto de Alfonso Otaegui

Dentro del marco el proyecto Antropología de los Smartphones y del Envejecimiento Inteligente (ASSA), nos hemos comprometido a trabajar colaborativamente con una iniciativa local de salud móvil, o cualquier iniciativa que mejore el acceso a los servicios de salud y el bienestar de las poblaciones con las que hacemos trabajo de campo.

Al principio, aún antes de comenzar mi trabajo de campo, yo imaginaba que esta iniciativa consistiría en la creación e implementación de una aplicación específica de salud móvil, la que respondería a una necesidad observada en el campo. Este abordaje implicaba detectar un vacío en el campo –una necesidad aún no abordada pero advertida por el etnógrafo– y crear una aplicación que llenaría ese vacío. Era en verdad una idea de implementación desde arriba hacia abajo: sería yo quien le daría a la gente algo que necesitaba, pero cuya necesidad ellos mismos desconocían.

Luego de un par de meses, advertí que sería más sensato simplemente describir una aplicación ya en uso –y usada creativamente por la población– y llevar ese uso particular, esa idea local, a otro lugar donde tal idea pudiera ser útil. Este abordaje, que podría definirse como ‘desde abajo hacia arriba’, implica –al contrario del abordaje anterior–  el reconocimiento de la creatividad de las poblaciones locales en la adopción de tecnologías de comunicación, lo que Pype (2017) llama ‘inteligencia desde abajo’. Con el mismo objetivo de llevar buenas ideas de un lugar a otro, también hemos comenzado en el equipo a armar una lista de ‘buenas prácticas’ en atención médica a lo largo y ancho de todos nuestros sitios de campo.

Con este objetivo en mente, pasaré los últimos seis meses de mi trabajo de campo en Santiago llevando adelante una etnografía en un centro oncológico en un hospital público. Este hospital en particular es el único hospital público en Santiago que ha implementado el modelo de cuidado de ‘enfermeras de enlace’ o ‘nurse navigator’ (Devine 2017).

Las enfermeras de enlace trabajan como mediadoras entre los pacientes oncológicos y el sistema médico y burocrático de un hospital público en una zona de bajos recursos. Los tratamientos oncológicos implican dos complejidades para el paciente: la complejidad médica del tratamiento en sí, y la burocracia del sistema de salud pública. Los diversos tratamientos oncológicos pueden tener variados efectos sobre distintos sistemas del cuerpo, por lo que seguir el tratamiento implica manejar mucha información. La gestión del tratamiento implica una serie de procedimientos (diagnósticos de imagen, sesiones de quimioterapia, exámenes de sangre, etc.) que requieren recetas y turnos, que tienen que llevarse a cabo en un orden específico, y dentro de cierto tiempo (si no, las probabilidades de mejora decaen). Las enfermeras de enlace gestionan el tratamiento para el paciente, ya que tienen conocimientos para enfrentar ambos tipos de complejidades.

Según el oncólogo Bruno Nervi, presidente de la fundación Chile sin Cáncer, hay cerca de 100 oncólogos en Chile, cuando se necesitan 400 (55.000 personas son diagnosticadas con cáncer cada año) (‘La Fundación Chile sin cáncer (…)’ 2018). Dado el gran número de pacientes, los oncólogos no tienen el tiempo de explicar todos los detalles del tratamiento. Las enfermeras que trabajan en la sala de quimioterapia enfrentan el mismo problema, ya que tratan de atender tantos pacientes como sea posible. Las enfermeras de enlace, entonces, llenan este vacío al educar a los pacientes sobre los detalles de la enfermedad y su tratamiento y al mediar ente los pacientes y el complejo sistema burocrático de la salud pública de Chile. Ellas hacen todas las citas para exámenes, análisis de sangre y demás –lo que requiere mucho papeleo– y se mantienen en contacto con el paciente en caso de que éste tenga alguna duda o inquietud. Estas enfermeras dedicadas constituyen un factor humano en los servicios de salud que ninguna aplicación puede reemplazar. Las enfermeras de enlace, sin embargo, sí usan una aplicación, la aplicación de mensajería más usada por los pacientes: WhatsApp. Según las enfermeras de enlace, WhatsApp les da la capacidad de usar los varios modos de comunicación según las particularidades y necesidades de cada paciente: algunos prefieren una llamada por teléfono, otros se sienten tranquilos al ver una foto de la receta o turno de examen, algunos necesitan un mensaje de audio que puedan escuchar varias veces hasta entender (muchos pacientes son de bajos recursos con escaso nivel educativo). Además, las enfermeras de enlace están disponibles para los pacientes por cualquier duda o pregunta que puedan tener. Estas enfermeras están ahí para ellos, para responder sus inquietudes y confortarlos, ya que el tratamiento y esta relación de cuidado a distancia puede llegar a durar años.

Daniel Miller, investigador coordinador del proyecto ASSA, escribió en su último libro ‘The Comfort of People’ sobre el uso de nuevos medios de comunicación con pacientes terminales con cuidados paliativos. En ese libro Miller recomienda crear un protocolo de uso de nuevos medios entre paciente y personal de salud (2017: 218). El uso de WhatsApp por parte de las enfermeras de enlace de hecho sigue un protocolo que se fue desarrollando en los últimos años a partir de la experiencia. Yo intentaré describir este protocolo y este uso de WhatsApp y construir un modelo que pueda ser replicado. Realmente tengo la esperanza de poder llevar esta buena idea que se desarrolló localmente a otros hospitales públicos de Chile.

 

 Referencias

Devine, A. (2017, 3 de abril). The Nurse Navigator: A Patient’s Compass On The Healthcare Journey. Extraído de 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, 15 de octubre). Extraído de 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. En C. C. Mavhunga (Ed.), What Do Science, Technology, and Innovation Mean from Africa? (pp. 97–115). Cambridge, Massachussetts: The MIT Press.

Nurse navigators and WhatsApp: an example of smartness 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.

Living alone vs. loneliness: Notes from a Milanese neighbourhood

ShireenWalton1 September 2018

Photo (CC BY) Shireen Walton

One of the key features of living in Milan are the characteristic apartment buildings (pictured below). Built in the early 20th century, these buildings, known as ‘palazzo’ (palazzi pl.), have housed generations of families, groups and individuals over the decades; Italian and non-Italian, working and middle-class.

Typical apartment buildings in the Milan fieldsite. Photo (CC BY) Shireen Walton

Photo (CC BY) Shireen Walton.

Living here, in an inner-city, multi-ethnic neighbourhood in Milan, I am struck by how many people I have come to know who live by themselves. My findings reflect official figures on single-person households, which are increasing exponentially within Europe [1] (a majority being in northern European countries), as well as globally, as witnessed in countries such as Japan, China, and Brazil [2]. In 2016 in the EU, single-person households accounted for almost one third (32.5 %) of private households, with a higher proportion of women (18.4 %) living alone than men (14.1 %) [3]. In Italy, the national average for people living alone is 31%, while in Milan, 52% of households consist of one person [4]. Among a number of explanations for people living alone through choice and/or circumstance are; a number of socio-economic changes over the last 60 years, shifts in work and lifestyle patterns, higher separation and divorce rates, evolving gender roles, and a potent legacy of 1970s Italian Feminism in challenging normative expectations of nuclear family models.

In light of this increasing trend, ethnography can help question some common assumptions about people who live alone – namely, that such people are alone in their lives. In her monograph (2015) on the subject of Italian women above the age of 45 living alone in Milan, Sociologist Graziella Civenti, based on a sociological study of 250 women, found that through a variety of collective ties, practices, and networks, such women establish intricate care and exchange networks that carry out many of the social and economic functions traditionally carried out within and by the nuclear family structure. In so doing, they are able to establish a functional sharing economy that is mutually sustaining and nurturing based on the premise of solidarity, mutual assistance, and attending to common problems [5].

Civenti’s findings resonate with my own unfolding research here in Milan, on ageing and smartphones amongst Italians and migrants, where among my informants who live alone, there is a similarly strong emphasis on the role of networks, of various kinds, on- and offline, in offering care, comfort, and physical/virtual participation in various contexts. To take two brief examples to illustrate:

Claudia (Italian) is 54. She originally moved to Milan from a nearby northern Italian town to study, work and to ‘escape her family and close-knit life’. Claudia lives alone in a palazzo building in a central part of the neighbourhood. She is separated from her husband, and has no children. She works full time at an administrate job in the city. Her Mother (late 70s), who she duly visits every weekend, lives in another northern Italian city. Claudia’s next-door neighbour is a female widow, Clara (84) whose two children live in other cities across Italy, and who she sees infrequently due to their busy lives. What once started out as a co-sharing of responsibility of watering each other’s pot plants on the balcony of the floor in which they live, eventually blossomed into a friendship over the 15 years the women have lived side-by-side. Claudia describes Clara as her ‘go to person’ for many things:

“If one day I was to have a fall, or pass out on the floor, it would be Clara who would notice first. She would notice my absence; my leaving for work in the morning, my coming home at night… family/friends wouldn’t notice for days, even weeks. Clara would go around to check on me. I’ve given here a key of course. I also have hers.”

The relationship between the two women now constitutes a kind Mother-daughter one; one that has been gradually crafted through a mix of neighbourly goodwill, as well as a cross-generational female bond nurtured through mutual care giving and receiving.

For other women in the neighbourhood, such as those living alone away from their home country, the issue takes on different dimensions.

Zaina (35) is from Tanzania. She lives alone with her two-year old daughter in a small apartment obtained through the help of social services. Zaina left her country two years ago in the hope of what she envisaged to be better economic opportunities in Europe. Her husband (also Tanzanian) is currently working in another African country. She is in contact with him, and her Mother back home, via WhatsApp. As an outsider to many of the social and ethnic groups here in Milan (most of the Tanzanian people she knows in Italy are in Naples – she is connected with them via a WhatsApp group), Zaina explained how she can feels lonely sometimes. With a young daughter that she has been told is too young to attend some of the local nurseries, searching for a job proves challenging. However, due to various on– and offline practices, Zaina described how she is ‘never really alone’. Her smartphone, providing she has credit on it, keeps her company. It connects her to family back in Tanzania, and to siblings living in other European countries. From time-to-time, Zaina attends community events at the public school in the park near to her apartment, where she can be around other Mothers, celebrate festivals such as Eid, and connect with the wider community, including attending Italian language classes. Unlike Claudia, for Zaina, it is not the apartment building space that provides the community feeling she finds so comforting, but the exact opposite – it is through her reaching out beyond the confinement of the apartment – to wider spaces in the community, and online to social media – that she feels she and her daughter are present and to varying degrees, cared for, both in Milan and back home in Tanzania.

Photo (CC BY) Shireen Walton

There therefore seems to be a complex sociological relationship between living alone and loneliness that I am exploring through my ethnography. I am beginning to see how in various spaces (social, geographical and digital) of/for care, people who live by themselves co-construct wellbeing through everyday acts, through which they craft themselves into social worlds, on- and offline – from the next-door-neighbour chats, to family/culture-linked WhatsApp groups, and beyond. At a time in history when an increasing number of people are living alone, (digital) anthropological findings that emphasise everyday lives lived can help unpack societal prejudices and assumptions, such as the hyper-individualism of such people, or that living alone infers a person’s loneliness and/or alterity in society. Challenging these ideas may prove difficult in the societies themselves, but nuancing the issue further by taking into account a range of individual lives and practices, can have a number of implications for social policymakers, particularly when it comes to ageing populations such as Italy, with 28% of the population over 60, and 31% living da sola/o.

References:

[1] Eurostat, 2017: https://ec.europa.eu/eurostat/web/products-eurostat-news/-/DDN-20180706-1?inheritRedirect=true

[2] Civenti, G. (2015). Una Casa Tutta Per Sé. Indagine Sulle Donne Che Vivono Da Sole. FrancoAngeli, Edizioni.

[3] Eurostat, 2016 report: https://ec.europa.eu/eurostat/statistics-explained/index.php?title=People_in_the_EU_-_statistics_on_household_and_family_structures#Single-person_households

[4] Civenti, G. (2015). (Ibid.)

[5] Civenti, G. (2015). (Ibid).

[6] United Nations 2015 World Population Ageing Report

The place of WhatsApp in the ecology of care

Marilia Duque E SPereira26 August 2018

Author: Marilia Duque

Dr. Gusso uses WhatsApp Business at Amparo Health Clinic (Photo: Marilia Duque)

In 2015 a PwC research report suggested that the Brazilian m-health market would reach $ 46.6 million while a GSMA report forecasted that 45.7 million Brazilians would benefit from mobile health projects (see here). In 2017 the scenario was even more optimistic. According to Statista, Brazil was expected to become the largest m-health market in Latin America with revenues of around $ 0.7 billion. These numbers explain the impressive amount of m-Heath startups and startup Incubators I’ve seen in Sao Paulo (see Eretz.bio, for example). But they don’t explain why after 7 months of fieldwork I still couldn’t find the people who are actually using these m-health apps. Instead, I found an intensive use of WhatsApp among my informants, filling the gaps in communication and making a huge impact on the ecology of care which we address in this project.

For example, every day early in the morning, Ms. M (54) sends a good morning message through WhatsApp to four lady-friends older than her. “It is like volunteer work because I know they are lonely and that message will make them happy and socially connected”, she explained. Ms. D (66) also starts her day sending a WhatsApp message. But in her case, the message is sent to her only daughter who lives in France, as a sign that she spent the night well. She is supposed to send this message every day before 10am otherwise her daughter will call a friend to check on her. “Some people say my daughter abandoned me, but the truth is that she is closer than many of my friends’ children who just live nearby”.

That is the same in the case of Dr. J., a physician who works in Sao Paulo and uses WhatsApp to take care of his 93 year-old father. After having a stroke, his father moved to Dr. J. brother’s house located two hours away.  Dr. J. created a WhatsApp group to talk to his brother and to his father’s caregiver. He gives her all the instructions she needs, and she updates him with information such as what his father ate, how he slept, how much water he drank, how much he exercised and how he was feeling. After a few months, he could tell how improved his father was and he explained how WhatsApp helped him and his family to feel safe and engaged.

Dr. K. also uses WhatsApp to provide care at distance. He works in my field site as a generalist providing ambulatory care to old people. WhatsApp allows him to give orientation about what to do when patients don’t feel well, and he can also ask them to go to his office if necessary. In many cases, he said, he can solve problems providing only care at distance. Dr. K. believes that the simple fact that the patients know they can use WhatsApp to contact him makes them feel safe and comfortable.

WhatsApp is also helping clinics to manage people’s health. Amparo Health, for example, is a clinic that uses WhatsApp Business to connect patients to doctors. The patient pays a monthly fee to have access to low-cost exams and to specialists like ophthalmologists, gynecologists, dermatologists, nutritionists and psychologists. What is new here is that all procedures and exams are coordinated by a generalist, who is available on WhatsApp. Dr. Gusso, the head physician at Amparo Health, explains that because the clinic business model is based on membership, they have no interest in demanding unnecessary exams or appointments. Doctors are paid by the hour and not by performance and that includes time to answer WhatsApp messages during the morning and afternoon. At the end of the day, he said, they are using WhatsApp to provide care at a distance, helping people to stay healthy, to feel safe and to save money. Prevent Senior, a health insurance company, also uses WhatsApp to make patients’ lives easier. In cases where treatments require on-going medication, patients can use WhatsApp to ask for new prescriptions. They can receive their prescriptions at home or they can go to the doctor office to get them, but with no need to schedule an appointment.

WhatsApp is the primary method of communication for 96% of Brazilians with access to smartphones. And among my informants older than 60 years old, that is also the app they use the most. Now imagine what can be achieved if WhatsApp features are explored to make the communication between health insurance companies, doctors, patients, caregivers, family and friends healthier too.

Blame the phone..! UI design and elderly smartphone users.

Alfonso ManuelOtaegui12 August 2018

Photo (CC BY) J Stimp.

 

As I mentioned in my previous post, a first step in my ethnography of the experience of ageing and the use of smartphones involved volunteering at a cultural center in the working-class neighborhood where I am living in Santiago de Chile. For a couple of months, I have been a teacher’s assistant in two workshops on the usage of smartphones aimed at elderly people. In these workshops lasting for four weeks, enthusiastic grey-haired students learn the basics of smartphones settings (unblocking the phone, connecting to Wi-Fi, turning on and off the GPS, flight mode and the like), how to use the Camera app, Whatsapp and Google Maps.

In addition, for a couple of weeks, I have been giving a complementary workshop by myself, for those who have already finished the main workshop. This complementary workshop focuses on repetition and exercising: students have the opportunity to practice in more extended periods of time what they have learnt in the first workshop, and to go step-by-step over and over again. This complementary workshop has given me the opportunity to be in more frequent contact with the students, and to become more familiar with their struggles and their success in mastering this nowadays pervasive new device. Many of the difficulties I noticed have been also spotted by my colleague Marilia Pereira in her field site in Brazil.

One of the most common feelings expressed by the students at the beginning is frustration: the phone doesn’t do what the teacher has just shown, the screen goes off all of a sudden, or cryptic warnings pop up, among other things. In my short experience so far, the most common —yet invisible— difficulty lies in the touch interface. Many elderly students find it difficult to distinguish between a ‘tap’ and a ‘long press’, and they tend to do a ‘long press’ when a ‘tap’ is required. I believe it is related to the lack of self-confidence when using the smartphone: they press the button long enough to be sure they are pressing it (as with a door bell). The problem though, is that the long press is a different input and therefore produces a result other than the expected one. Another difficulty lies in hitting the exact right spot on the screen, as, again, a slight miss has a different outcome (e.g. on Android’s Whatsapp’s chats menu, hitting the contact picture will show you that picture, hitting just a little to the right will open the chat), contributing to the general feeling of frustration.

Another common experience is the feeling of being overwhelmed by the vast array of menus, gestures, and different ways to do the same things on the smartphone. Having shared many classes with these elderly students, I started to grasp the experience from their point of view. Considering the difficulties of the touch UI, the diversity of Android iterations, manufacturer’s software skins, etc., I can see how complex and overwhelming this experience might be. All the functions of the phone seem chaotic to me now: there is no clear logical hierarchy in the arrangement of apps and functions. Most of the students do not recognize the difference between the home screens and the app drawer (the majority have Android devices), especially when the wallpaper in the app drawer is the same as on the home screens (but, adding to the confusion, this does not happen with every phone). One old man did this to access the camera: instead of tapping the camera icon on the home screen, he would tap the app drawer icon, and then the camera icon inside the app drawer. Furthermore, as the teacher of the main workshop pointed out, they expect to learn the ‘one way’ to do something on the phone, while multiple ways are possible (and sometimes these are needed, when one of the ways does not work).

In these situations of frustration, they tend to blame themselves (“I don’t understand technology” or “my head is not good for this”) as they judge themselves unable of learning the intricacies of this device, which seem evident for their grandchildren (who don’t have the time nor the patience to teach them). Having experienced this frustration myself when trying to teach a simple procedure to a new student whose specific smartphone model I have never used, I wish they would allow themselves to blame the phone now and then (I certainly do). Sometimes the interface is not as intuitive as it should be, sometimes too many shortcuts stay in the way and sometimes there is no visual cue on where to tap (the flat design of previous years has made this worse). However, I must say that they blame the phone sometimes, but in the most radical way: ‘this phone does not work’ (therefore, it must be changed). This has happened when they had accidentally left the phone in flight mode or silent mode, and they were unable to either receive phone calls or hear them, respectively. It is as if they could see the problem only in themselves or in the hardware (the phone as a device), while the software (and UI design) remains a blind spot. The interface is there, yet it goes unnoticed.

All in all, this is just the beginning of a long path for these new old beginners. It will be interesting to see if, as the workshop progresses, these engaged learners build up more self-confidence and make their way through the garden of forking paths of mobile UI.

Double feature

MayaDe Vries Kedem19 July 2018

Author: Maya de Vries

My field site last month was a bit sleepy as it was Ramadan. This holiday continues over a whole month during which Muslims fast throughout the day, break the fast after sunset, and continue eating throughout the night. In Jerusalem, during these days, school and work places usually finish early and people who fast prefer to stay home, especially when Ramadan takes place in the summer and the heat forces people to stay indoors. During Ramadan, the elderly club at Dar al Hawa was closed and there were no activities at all. However, its WhatsApp group, “The group of the elderly club members,” was open 24/7.

As mentioned in my previous blog post, as part of my ethnography, I conduct a participatory observation at the elderly club at Dar al-Hawa Community Center. Recently, they agreed to add me to their WhatsApp group, which was established in October 2015. The admin of the group is also the coordinator of the elderly club. Besides the admin, there are 30 members in the WhatsApp group, although 50 members participate in the weekly meetings and activities at Dar al Hawa. That means that people do not receive information through the WhatsApp group. Instead, the coordinator phones them about the regular activities of the club, such as sport lessons, field trips, and so on. However, some information they miss since they are not part of the WhatsApp group; that is the informal messages, which are usually composed of images of flowers combined with a “good morning” or “good evening” blessing or other quotes from the Qur’an calling to pray to the Prophet Muhammad.

They also do not receive the various videos containing information about bad foods, such as snacks, that cause cancer, a disease that bothers everyone at the club.

When asking their club’s coordinator if she thinks it matters that some members of the group miss such information, she said it is not a big deal. I agree with her that it is not such a big problem, as long as they get the formal information and keep on coming to the club every Sunday and Thursday. However, I do think it can affect to some extent the sociability of the members who do not carry a smartphones and cannot use WhatsApp. Those images of daily greetings have a positive impact, based on my short experience in the WhatsApp group.  Just reading the blessings and seeing the joyful image attached—usually of red and pink flowers—have a positive impact, even if it is just a minor one.

Nevertheless, an image is just an image, and it is fair enough to say that looking at it will not solve major problems of elderly such as loneliness, difficulties in walking, or reaching high shelves at home.

Overcoming such problems is not easy, and one of guest lectures at the elderly club dealt exactly with such issues. The lecturer was a representative from the non-profit organization called Mini Active. This important organization run by women only has a project for elderly people in which an authorized instructor for the golden age meets with elderly people, including the elderly club in Dar al Hawa, and brings all sort of objects for keeping the home environment safe. There was complete silence during almost the entire lecture, indicating that it was an important topic. I sat quietly as well during the lecture and took photos of the various objects.

At the end of the lecture, they all approached the table where the objects were exhibited and asked the instructor many questions. There was a big fuss and noise around the table, and it seems many of them asked if they could buy some of the objects, but they were not for sale. The instructor explained where they could buy them, but not all of them heard her, meaning they missed this important information. Furthermore, it means that probably they will have to go with someone from their family because many of them do not drive or need assistance when leaving the village of Dar al Hawa. I felt an urge to do something for those who did not hear her or would not remember how things look like when they go to buy them. Therefore, I took photos of each object and sent them immediately to their WhatsApp group. While sending it, I knew that there were club members who would not receive these important photos. Furthermore, other important information was missing, such as the locations of the shops and their phone numbers. Therefore, I prepared a file with all the photos of the objects and the names and details of the nearby shops where they can buy them. I sent the file in the WhatsApp group, but more importantly I printed 30 copies and handed it personally to each one of the club’s members who were present in the last meeting.

خدمات.docx.pdf

Why is it important to blog about this? I find this experience significant to the ASSA project that aims to understand how digitation assists seniors. It is a great example of how elderly people experience life today. They are in between the fast pace of smartphones and the digitization of life, but not all the time, and certainly not all them are, as happened at the Dar al Hawa elderly club.

So, let’s imagine a scenario of a person going to buy one of the objects he was told about in the elderly club’s lecture. But, he cannot remember its name and he mistakenly forgot his phone at home so he does not have the image with him.  The information paper handed out at the meeting was left in his bag, folded inside his wallet acting as a safety net, un-digitized. Now he can quietly buy what he needs. Therefore, it seems to me that when thinking of life improvements for older people, it should always be on both tracks, with digital and non-digital features. In a way, it is like a double feature screening, of the same movie from two different copies: analog and digital.