Interview and multimedia: Salina Christmas*
13 August 2010
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It’s not an exaggeration to say ‘loneliness kills’, given the number of studies highlighting the harmful effects of social isolation on patients. For the elderly patients, the absence or availability of social support from caregivers and healthcare workers make all the difference to their physical and mental well-being. Salina Christmas speaks to Intel’s chief ethnographer about the use of a ‘social software’ in promoting ‘social inclusion’ among the elderly
Much has been said and written about remote patient monitoring applications and their relevant disruptive technologies as a panacea for the rising cost of healthcare and an increasingly aging population.
Lest we forget, digital networks are built with human interaction at the heart of it. The internet went ‘consumer’ two decades ago not because it was a business model dreamt up by search engines and computer hardware companies, but because of the social interactions it facilitated.
One of the early modes of digital interaction was the ‘chat room’. That might now be replaced by social network portals in terms of popularity, but it still has relevance in Intel’s social software project for isolated older people.
A talk on the software prototype, Building Bridges, was presented to an audience of caregivers and healthcare professionals by Dr David Prendergast, Senior Researcher at Intel's Digital Health group, at the 5th International Carers Conference in Leeds, UK, in July.
Dr Prendergast’s presentation, “Linking the lonely: co-designing social software for isolated older people”, inspired me to ask him: Is loneliness such a major issue in the care of elderly patients? Are urbanisation and a career-driven lifestyle responsible for this loneliness and isolation?
Digital application as a ‘loneliness intervention strategy’ The aim of Building Bridges is to re-establish "communities of interest”, such as the homebound elderly patients at risk of social exclusion. For the project, Dr Prendergast and his team began by looking into two key issues: loneliness and isolation.
“At TRIL (Technology Research for Independent Living), we spent a lot of time conducting ethnographic research into loneliness and what it meant,” he said.
One of the assessments used by Intel and TRIL at the St James's Hospital in Dublin, Ireland, is the De Jong Gierveld loneliness scale. It looks at two types of loneliness: social and emotional. In this context, social loneliness indicates the lack of social integration, whereas emotional loneliness indicates the lack of attachment to a significant other.
The scale was developed by Prof Dr Jenny Gierveld of the Department of Sociology and Social Gerontology, Vrije Universiteit, Amsterdam, the Netherlands, in cooperation with her students. It is used in empirical research among younger, middle-aged and older adults. The scale is now used in major surveys in more than twenty countries all over the world, ranging from the countries in Western, Southern and Eastern Europe to Canada, Australia and Japan.
"It means that one can live alone, but not be lonely, or one can be lonely but is not alone. This has been established in the research,” he explained. “For Building Bridges, we take that to the next level. We cannot have a blanket solution [in the approach to loneliness].
“For example, if you are looking for intervention, a different application is needed to tackle the recently bereaved [compared with another cause for loneliness].
“At Intel and TRIL, we are looking at how we can move care into the home setting. Care is not limited to hospitals and home but in all continuums.”
The ‘social’ software Building Bridges is not a product but a prototype. It is one of the initiatives run by TRIL.
TRIL is a groundbreaking research initiative, founded in January 2007 by Intel and the IDA Ireland (Industrial Development Agency), to explore the physical, cognitive and social consequences of ageing and design technologies to help address them. In April 2010, GE joined the TRIL Centre as its second industry partner, alongside co-founder Intel and academic partners University College Dublin, Trinity College Dublin and NUI Galway.
The aim of Building Bridges is to alleviate the issues affecting old folks, such as loneliness and isolation. The Building Bridges project explores how technology can help older people remain connected with family, friends and people in their community.
The prototype is co-designed with the objective of making it an intuitive technology.
The research is partly informed by Mima Cattan’s 2005 systematic review of loneliness interventions, which suggests that some of the most effective interventions are achieved either by group communication, either face-to-face or remote, with focused, time limited activities such as educational content.
Isolation – a big problem among the elderly in the UK
According to a 2008 report by Age UK, which looks at the relationship between loneliness and social relation:
• half of people over 75 years of age live alone (51%, General Lifestyle Survey 2008, ONS 2010);
• 12% of older people (over 1.2 million) feel trapped in their own home [i];
• 6% of older people (nearly 600,000) leave their house once a week or less
• 3% never go out at all (no update available); and
• half of all older people (about 5 million) consider the television as their main form of company.
The dimensions vary between countries, said Dr Prendergast, but isolation is still a major issue in the said regions.
By putting themselves in the patients’ shoes, the team of social scientists and designers set about to find out what their informants see on a daily basis at home.
“They could see the Meals on Wheels menu and volunteers, friends, neighbours, and the healthcare workers or carers,” said Dr Prendergast.” Their contact is limited except by phone. If they have a communication system that runs on broadband, the services won’t be restricted to pay by charges.”
Designing the experience The work on Building Bridges began in 2007, where the team did a preliminary research into the use of Skype phones, as well conducting interviews and focus groups with community dwelling older people.
“The participants were blown away with the use of teleconferencing and could see lots of applications in their everyday lives, especially for those who had distributed family or friendship networks, such as we see in Ireland as a result of the ‘Diaspora’ (widespread movement of ethnic groups which underlines emigration).
“In the early stages of research, we looked at how older people would use a conference call system. The researcher led the conversation with the participants. After six talks, they entered a stage whereby the participants conversed among themselves un-facilitated, about different topics.
“The ethnographer observed the interaction that went with those calls.”
Video conferencing vs conference calling The team found that some participants liked video-conferencing, and some didn’t. Said Dr Prendergast: “We liked the Skype communication that we looked into in 2007, but our interviewees found that was limited in the sense that it is can be hard for old people to start using Skype, as it is not intuitive enough for people with no experience with computers whatsoever.
“How could we use a graphic kind of interface that facilitate group conversations, but doesn’t rely on video conferencing?
“Video conferencing was great for one-to-one, but not for group conversation, as the demand for broadband [access needed to run the video stream] is too great.
“We pushed for ‘conference calling’, also by attaching graphics to the interface in accordance to the level of literacy of the older people.
“We received feedback from the participants. A participant recommended speech bubbles to see who is represented among those present in the online conversation. We developed a little speech bubble to signify the person who is doing the talking.
“In a conference call, some people are active and some people lurk in the background. One of the reasons given for the latter is: ‘I can’t break into a conversation’. A mechanism was then introduced that allows participants in the online conversation to take their hands up. There is a button that can be pushed to ‘put one’s hand up’. We also have a psychologist to help with the ethnography in the development of the visual conference calling system.
“The question is how do you hook in people who are socially isolated and coax them to join this call?”
The hardware design that resulted from this ethnographic research is a device that incorporates features of the ‘older’ digital media that the older patients were familiar with. Dr Prendergast said: “We therefore stick to familiar metaphors and look to the ‘broadcast’ model, such as television and radio. We came up with a system that incorporates, as the hardware, a touch screen computer with a telephone handset attached to it. It also features a conference call screen.”
Co-designing the social software, using anthropology  Dr David Prendergast is a social anthropologist in the Digital Health group at Intel and a Principal Investigator in the Social Connection Strand of the Technology Research for Independent Living (TRIL) Centre.
His research over the last 12 years has focused on later life-course transitions and he has authored a number of books and articles on ageing and health. Dr Prendergast utilises ethnographic research to co-design, test and iteratively develop culturally appropriate independent living technologies for older people.
Technology Research for Independent Living
The 5th International Carers Conference 2010: New Frontiers in Caring |
Communications as social care
Communications also play an important role, although not in the manner that the professional media practitioners are accustomed to.
In the most recent trial involving several patients, the team ran three broadcasts using the prototype software and hardware, local news in the morning, a programme on healthcare in the afternoon and entertainment in the evening. ‘Contents’ in this case are used not only to convey messages, but also to get the community to get into a conversation afterwards.
“Whilst getting the local news, they can see who else is in the network. After the broadcast finishes, a 15-minute conference call is created. They can discuss with their network the big ‘thing’ of the day,” said Dr Prendergast.
“It is a successful programme, in particular the healthcare news. Participants look to the healthcare news for guidance on nutrition and health conditions. After a broadcast on dementia, three ladies whose husbands were affected by Alzheimer got in touch with each other. We weren’t aware of this information until after that broadcast.
“Another issue we looked at [and discussed in the broadcast] is the ‘fear of falling’. We have a strong fall team at TRIL.”
Falls are a key problem affecting older patients, which could affect not only their mobility, but also their confidence. Dr Prendergast explained that after a serious fall, an intervention done within six weeks can help the patient regain his or her confidence. If left without intervention, the patient will develop a fear of falling, which could contribute to social isolation.
“Guidance is given [during the health broadcast] on how to avoid falls. For example, many patients fall when they first get out of bed. So, they are advised that before standing up, they should sit up for a while for the blood circulation to improve before getting out of bed.”
Another intervention strategy: an online ‘wish list’ portal  | Kit4troops.org.uk is an online wish list portal developed by social anthropologist Steven McGregor (left) and linguist Inaam Tahir. McGregor tells Clinica that the anonymity experienced by the soldiers contribute to the feeling of isolation
Photo: S Christmas | The use of online platform as an intervention strategy in alleviating isolation is also a key feature in an initiative called Kit4troops.org.uk. Founded by two UCL postgraduate students, Steven McGregor of Social Anthropology, and Inaam Tahir of Linguistics and Translation (pictured, left), the online platform acts as a digital wish list for UK troops stationed abroad who require items such as sunglasses, boots and books to read.At the launch at the Department of Engineering at UCL, McGregor and Tahir told us that medical supplies are not yet considered as part of the wish list as some items have to go through the approval of the UK Ministry of Defence. McGregor, an Iraq veteran from Florida, US, was inspired to come up with the initiative based on his personal experience in the military. The “anonymity” enforced upon the soldiers due to the circumstances contribute to the feeling of isolation. Medical supplies for the troops might not be on the agenda for this Paypal-based system, but NGOs and health authorities involved in managing the well-being of recipients of medical aids and remote medical workers might want to study this model closely. Kit4troops.org.uk |
Care for the caregivers In addition to conference calling, the prototype also offers a ‘lightweight’ email system which is simple to use. It also offers a ‘tea room’, which is an open audio chat room open day or night. Up to 30 people can be in this tea room.
The tea room is aimed at both the patient and the caregiver.
“We got this idea from the caregivers,” said Dr Prendergast. Caregivers, as well as the person they care for, could be afflicted by loneliness. For instance, some, who get up to help change the bed for the patient in the middle of the night, might be unable to go back to sleep.
In that situation, who could the caregiver talk to at that time of the night? One of the recommendations received from a caregiver is to have card games on the system.
Can the digital device replace the human in terms of social interaction? No, said Dr Prendergast. It is very helpful in getting the patient re-established in a social network, but digital communication is not the replacement for face-to-face interaction.
I asked Dr Prendergast what the audience feedback was on the project after he presented his paper at the conference in Leeds. He said a caregiver stood up at the end of the talk and said: “Where have you been?”
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