In the contemporary context of global population ageing, anthropological studies of elder care offer a lens onto the ways global processes are experienced and managed in everyday lives (Buch, 2015; Cole and Durham, 2007). Care itself is an increasingly international phenomenon, with, for example, carers from the Global South hired as domestic carers in the Global North (Ahlin, 2017), with migrant children enacting ‘care at a distance’ (Pols, 2012), and with increasing exposure to elder care norms from different societies. In this way, as shown in the conversation with the principal hospital administrator in the Kampala fieldsite cited here, everyday family health care practices are an observable lived experience of wide-reaching socio-political processes. Elder care, or lack thereof, in turn, reflects, reinforces, and in some instances, disrupts these processes (Buch, 2015). This is both interesting for anthropological analysis, linking the individual and historical, and for the potential of sharing this knowledge to improve the health and welfare of our research participants.

In Kampala, an understanding of elder care norms in other societies present an idealised or disparaged alternative against which existing family expectations are re-established. Nakito is the principal hospital administrator at the regional government hospital near the Kampala fieldsite, which itself was built with international funding. She feels the health system she works in needs to have “better provisions for these [older] people”. With the ‘youthful population’ in Uganda, she finds that health policy and funding often forget older people, an approach which she feels should be rectified as the older population grows. She has been particularly inspired by the approach to hospital care for older people she observed on a recent training course in Korea, where she found that there were separate specialised geriatric services in hospitals. This highlighted for her the gaps in the Ugandan health system for older people. She finds that elderly people come to the hospital with multiple conditions and have to “roam around” for all the services they’re referred to, with long queues at each department. “They’re lining up around the hospital”, she says.

Queueing at the hospital. Photo by Charlotte Hawkins (CC BY)

In line with many other researchers (e.g. Nzabona et al., 2016; Oppong, 2006; Whyte, 2017), participants, policymakers and NGO advocates, Nakito is concerned about the future of elder care in Uganda, as institutionalising older relatives like in Europe and the US is “not allowed” and instead “they would rather abandon them”. She predicts that by 2040, 50% of people may choose not to take care of their older relatives, depending on their upbringing. The “natural rule and regulation” of family obligations means that global media portrayals of alternative, independent, selfish ways of life “make you feel freer than your original cultural norms”. Younger people may be influenced to become more ‘independent-minded’, with the ‘self’ more “on the agenda”. She said it’s now more common to hear people say, “I’m actually very busy”, instead of conforming to the expectation that “you must be there for people, as a team” and “check on your people” and “be responsible for your community, and your own belonging”.

Despite these concerns, Nakito herself takes care of her mother, visiting her every weekend in her home village a 5-hour drive from Kampala. She finds that most of her friends do the same thing at least once a month. Even when she allows herself a day off, at the end of it she feels it’s a day wasted without visiting someone. These family care obligations “leave little time for self”, particularly for women (see also Wallman and Bantebya-Kyomuhendo, 1996). Nakito thinks this leads people to focus on the “smaller picture of family units, and sometimes forget society”. She attributes that to the “pressure of globalisation”, which has reduced the community bond to smaller units, based on proximity. In other words, paradoxically, personal pressures imposed by global processes are turning a once more social outlook inward to immediate families or within the household.

The “pressures of globalisation” are also evident in the health outcomes of contemporary lifestyles in the city, with cooking oil and sugar prominent in people’s diets, work over long hours an economic requirement that continues into old age, and increasingly prevalent chronic long-term non-communicable diseases. In this context, the family is crucial to supporting the health of the individual, particularly to supply the time and resources for care. This can result in older people and their relatives adapting to long-term treatment routines. As Sandra Wallman & Grace Bantebya-Kyomuhendo, anthropologists of ‘informal economies of health’ in Kampala, put it; “in economically constrained settings, health choices become health compromises which in turn, become family routines” (Wallman and Bantebya-Kyomuhendo, 1996: 151). As with the ASSA project’s health collaborations and later outputs, by ‘meticulously documenting’ observations of these routines and also the ways in which health conditions are understood, medical anthropology can promote an understanding of the impact of the political economy on marginalised low-income people (Farmer, 2004; Kleinman, 2012), and attempt to centralise human experiences in health systems.

References

1. Ahlin, T., 2017. Only Near Is Dear? Doing Elderly Care with Everyday ICTs in Indian Transnational Families: Elderly Care with ICTs in Indian Families. Medical Anthropology Quarterly. https://doi.org/10.1111/maq.12404
2. Buch, E.D., 2015. Anthropology of Aging and Care. Annual Review of Anthropology 44, 277–293. https://doi.org/10.1146/annurev-anthro-102214-014254
3. Cole, J., Durham, D.L., 2007. Generations and globalization youth, age, and family in the new world economy.
4. Farmer, P., 2004. An Anthropology of Structural Violence. Current Anthropology 45, 305–325. https://doi.org/10.1086/382250
5. Kleinman, A., 2012. Medical Anthropology and Mental Health: Five Questions for the Next Fifty Years.
6. Nzabona, A., Ntozi, J., Rutaremwa, G., 2016. Loneliness among older persons in Uganda: examining social, economic and demographic risk factors. Ageing and Society 36, 860–888. https://doi.org/10.1017/S0144686X15000112
7. Oppong, C., 2006. Familial Roles and Social Transformations: Older Men and Women in Sub-Saharan Africa. Research on Aging 28, 654–668. https://doi.org/10.1177/0164027506291744
8. Pols, J., 2012. Care at a distance: on the closeness of technology, Care & Welfare. Amsterdam University Press, Amsterdam.
9. Susan Whyte, 2017. Epilogue: Successful Aging and Desired Interdependence., in: Successful Aging as a Contemporary Obsession: Global Perspectives. Rutgers University Press., NEW BRUNSWICK, CAMDEN, NEWARK, NEW JERSEY; LONDON, pp. 243–248.
10. Wallman, S., Bantebya-Kyomuhendo, G., 1996. Kampala women getting by: wellbeing in the time of AIDS, Eastern African studies. James Currey ; Fountain Publishers ; Ohio University Press, London : Kampala : Athens.

The Comfort of People (2017)

In 2017 I published a book called The Comfort of People (2017 Cambridge:Polity Press), based on research amongst people who had received a terminal diagnosis and were being looked after by a hospice. In that book I made various recommendation for how the hospice might employ new media. More recently I was approached by a group who have been commissioned by the journal The Lancet to develop a special issue around the topic ‘The Value of Dying’. My contribution is called Dying with Smartphones. Much of the time since writing The Comfort of People has been spent in the ASSA project, so this more recent contribution reflects what I have subsequently learnt. The topic is significant, since given the rapid expansion in the usage of smartphones by older people, we might expect that in the future most people will ‘die with smartphones’.

One of the reasons new media matters to the hospice is that most people want to die in their own homes, or at least stay there as long as possible, so most hospice work involved going to, or communicating with, people at home rather than them coming to the hospice. A key finding in our current project, the Anthropology of Smartphones and Smart Ageing, is the appreciation of how much the smartphone has become what we can call ‘the Transportal Home’. On the one hand, it has become a place people live within rather than just a device they use, where they compose their thoughts and entertain themselves. On the other hand, it has huge potential in relation to loneliness and isolation since it is the portal through which we communicate with other people; very different from just watching television. So, the smartphone ‘home’ can be quite convivial. The ASSA project also reinforced the our theory of ‘polymedia’, which posits that different people feel comfortable with different forms of communication and the hospice should not assume which media suits which person. One patient might prefer WhatsApp, another might prefer communicating via webcam, and a third might prefer voice calls. Many people now first want a text that confirms if this is a good time to speak. So the sensitivity of the hospice can be expressed by following patient preferences with regard to how they communicate with people now living within this Transportal Home.

The ASSA project has also seen a huge expansion in something that was just starting during the hospice research, which is the creation of WhatsApp groups by relatives to support the patient. The team members in Brazil and Chile have observed how WhatsApp can be used by medical staff to manage patient requests and other purposes. In general, our project’s conclusion, which focuses on the free and ubiquitous apps that most people already use, rather than bespoke mHealth apps, also applies to palliative care. Each fieldsite offers additional insights. For participants in Kampala, one of the primary uses of smartphones and mobile phones is to send mobile money. These remittances would often be sent to support relatives’ health needs, such as transportation to the hospital and medical fees. Smartphones can also be helpful for people with limited literacy because of the capacity to send visual communication such as photographs.

A major facility of online communications is the space to discuss difficult and embarrassing topics. For example, in China there is widespread taboo against talking about dying. For many, social media has become the first space where people experience the possibility of talking to strangers on this subject. Working with hospice patients in the UK, I found that we need two kinds of forums. One is for those who want to discuss delicate issues around chemotherapy, but only with people who cannot know who they are. Then we need another for patients who only wish to discuss these intimate matters with people they can actually see or know.

Although the ASSA project is not based on studying people with a terminal condition, I very much hope that in the future it will provide useful pointers to the way we can improve our support for people who increasingly will be dying with smartphones.