Social, cultural and historical context
Thennan (aged 74) and Tisha (aged 72) are a married couple, originally from South India. They lived together in India and then Singapore before moving to London 33 years ago. Thennan worked for the British Air Force in the Far East, mainly in maintenance (changing tyres, stitching parachutes). On moving to the UK, he worked for Ford motor company for 10 years. They have lived in their current 3-bedroom home, which they bought, for 20 years. Tisha has been a homemaker all her married life. Both speak Tamil as a mother tongue, and Thennan speaks a little English; they were interviewed through an interpreter and given the scrapbook instructions in Tamil. They are deeply committed to their Christian religion, which is closely linked to the local Tamil culture.
Participant's experience of ageing and ill health
Thennan has diabetes and suffers from chronic pains in his lower legs, thighs and low back. Tisha also has diabetes and pain in the back and neck.
Thennan takes tablets for his diabetes and blood pressure. He also experiences shooting pains up his thighs and knees and sometimes in his back. This occurs when he sits down – the longer he sits the more intense the pain becomes. The problem has not been diagnosed yet. It does not affect his walking even if he is standing for long periods – in fact he has to walk around to get rid of the pain. Only sitting causes the pain, and this affects how long he can watch TV, read or write. Although standing is fine, the pain also comes up his upper back when washing the dishes in the kitchen.
Tisha takes insulin for her diabetes, heart disease and blood pressure. She also suffers from arthritis. The arthritis causes pain in her joints, back and neck – she is taking painkillers for this only provides temporary relief. Tisha’s mobility is quite restricted. She cannot walk far outside without needing to rest: she has to stop after 100 yards to get her breath. Problems walking up/down the stairs meant that their bedroom has had to be moved to the ground floor.
People in the participants' lives
Thennan and Tisha have 7 children. One son lives with them and five of the others live locally. They tend to see their children who live locally every Sunday at church. Everyone heads back to the house after the church service for lunch. The daughter outside of London speaks with them regularly over the phone. She also visits once a month and stays with them. They get regular visits from one or two close friends and occasionally get picked up by friends to go to their homes as guest. They are well connected to people in the local community and church. They particularly like the pastor at the church.
What matters to these participants?
Thennan and Tisha matter greatly to each other. They are one another’s main company and have a careful daily routine. Thennan gets up at 8 am and makes toast for himself and Tisha. When it’s all ready, Tisha comes to have breakfast. She injects insulin on her own. Thennan then washes the dishes, prepares the medicines for everyone (including their son who lives with them) and then he goes out to community Centre or shopping. He also does the various maintenance jobs around the home.
Family matters to Thennan and Tisha. The children will drive them to the hospital for their various hospital appointments. However, they do not want to disturb their children, and would take the bus or taxi when they are working. The son who lives at home is aged 40; he does not have a job, spends most of his time in the house and does not go out alone. He is on medication (which Thennan prepares and gives him every day), and also has hospital appointments to which Thennan takes him. Thennan says his son has a speech and language problem and needs help with looking after himself.
Thennan and Tisha have very different daily routines. Thennan is often out of doors. He walks to church alone on Fridays. Tisha has very restricted mobility inside and outside the home. The couple’s bedroom is now on the ground floor as she cannot get up the stairs. Tisha does not go out alone following a series of falls both inside and outside. She spends her days watching TV. She generally goes out only twice a week, both times with Thennan, to church on Sundays and to the community centre on Saturdays.
As a lifelong homemaker, Tisha used to enjoy cooking and was very skilled at it, but she is now unable to cook anything except rice. They now sometimes go out to eat because cooking is so difficult. Tisha also misses being able to do the gardening, though she goes out and tries her best. However, she still gets enjoyment talking about it, even though Thennan does most of it now. She tells the researcher about the various flowers that are due to come up.
Working for the military meant that Thennan acquired various mechanical and technical skills (electronics, carpeting). He still does a lot of DIY within the home – he points out that he made the living room door frame himself. He is pleased that he can still use these skills to helping other people (from church or the community centre), by doing handiwork such as changing bulbs, fixing electricity, or fixing plumbing or heating). He does not charge them for this. One of his wishes is to “help orphans”, but he has no money to do this currently.
Religion and Tamil culture matter greatly to Thennan and Tisha. The walls and shelves in their living room are decorated with Biblical texts and symbols, almost all written in Tamil. They pray together every morning at 8 am. In the evening he reads the Bible in the bedroom and she listens, repeating some passages, for up to 45 minutes. They listen to Christian music on the CD player throughout the day, and watch Christian DVDs and an Indian Christian TV channel (‘Holy God’). They are fortunate to be located within close proximity to their church, community centre and a Tamil social support service and office. This is the main reason they have remained at the house for 30 years. Their living room was originally used as the local Tamil church with regular guests attending, but the group moved to a rented church building as numbers grew. Occasionally they go on coach trips organised by the community centre.
Thennan’s chief concerns are his home and finances. He has been looking for documents to resolve a dispute over some property in India which the authorities think he owes tax on, and he also worries about a large deficit on his current property mortgage due to the fact that he was sold an endowment mortgage 20 years ago which has not produced the anticipated return. The stress of this has affected his memory: “Because of this I keep forgetting important things, hospital appointment. I go there and they say there was no appointment and I don’t know whether I forget the previous appointment or not”.
Technologies in participants' home and life
They have one mobile phone. Thennan is the main user of this. He makes and receives calls but does not know how to text. Thennan points out that Tisha also uses the mobile phone to make and receive calls, and is now asking to have her own. They do not have a computer in the home and do not know how to use one.
Thennan was supplied with the Philips MOTIVA system two years ago as part of the Whole System Demonstrator trial. This measures weight, blood pressure and blood sugar level. The control box is in the living room discreetly located within the DVD cabinet. He has some understanding that the measurements go to the local hospital but does not really know who sees them or what they do with them.
Materiality and capability
Thennan has taken some photographs of a row of computer terminals at the community Centre and says there are computer literacy classes available there. But he says he “does not have time” to join a class. It is also possible that, given the pain he is in when sitting, a contributing reason is that he would be unable to sit comfortably during the class. His children have computers at home but they operate in English so cannot teach him how to use one. He adds that they work hard in their jobs, so when they come home from work they have their own things to do. If he were able to learn, he would surf the Internet.
Thennan has no problem operating the MOTIVA system, but sometimes has difficulty remembering to take the measurements. He does not think that doing this once a week is a problem and only forgets about once every two months, at which point they call him to remind him to do it. If he does have a problem, one of his children will come and show him how to do it. He does however feel somewhat bemused that the only communication he has ever had from the telecare service is these reminders (“Two years I’ve been using it, nobody has come or called”).
Thennan feels that the telehealth system is time consuming to use and disruptive of his preferred routine.
"Sometimes I can't make her breakfast and I have to get up early in the morning to get everything ready – it only take about 15 minutes but it’s getting everything ready."
Real incidents of using (or choosing not to use) an ALT
When the researcher checks the MOTIVA system, he finds over 500 unread messages, all in English. Thennan explains:
"I put something on but they never come back to say do that, do this, he just passes on the information and that it. I don't find any use because they are not coming back to me. I don't read the message, I don't understand it...If it is in Tamil I would read it and then do it. It's very difficult to catch my sons [to read the messages]."
With Thennan's consent, the researcher views one of the messages on the MOTIVA screen, which reads: "Your last pulse value was quite low. Is there anything that could explain this value?". He reads this message slowly from the screen but cannot understand what it means. If it was in Tamil, he says, he would understand it.
Thennan feels that Tisha, who in many ways is sicker than him, is the one who really needs to be supported by the telehealth service.
"That [telehealth system] was given to me and I do my things on it, and I asked whether I can do her things on the same one, and they said that it has to be on a separate one, but still they have not given one."
But Tisha, who speaks no English, was not eligible for the Whole System Demonstrator trial.
When Thennan's MOTIVA device was installed, he was shown how to use it (he thinks it was a technician). They also left him a booklet with an engineer's number if he experienced any technical problems with the device. After the home visit, the researcher attempts on two occasions to phone the number that was on the manual - both times the system went through to voice mail. The researcher left a message and the service later returned the call. Apparently the data are still monitored though the service has now changed offices, which is why there was a delay in getting through by phone.
Thennan and Tisha are a good example of a couple who are well networked with family and community and who are currently managing well, largely as a result of these connections. Despite Thennan's health problems, he is still able to do things, and his ability to mend and maintain things allows him to find fulfilment as a handyman helping others in his community. He is also a carer to an adult son.
It is ironic that Thennan, who is currently easily able to get out of the house (and who regularly accompanies his son to hospital appointments), has a telehealth service whilst Tisha, who is virtually housebound, does not. Whilst Tisha's social and physical world are shrinking somewhat, with Thennan's help she still manages to get out of the house twice a week and remain part of her community.
Thennan's particular physical impairment is such that sedentary activity is painful whereas standing and walking are not. Perhaps this is why he spends so much of his time out of the house 'shopping', and he is clearly maximising his physical fitness as a result. Tisha, in contrast, has much more limited mobility despite a similar list of medical conditions.
That Thennan was entered into the Whole System Demonstrator trial but cannot understand the MOTIVA messages illustrates the complexity of literacy issues (English literacy, health literacy, digital literacy). He spoke enough English for the assessor to assume he was competent in using the technology, but not enough to actually use it. For him, the MOTIVA system is a one-way service, and to some extent it has become the patient, requiring attention from Thennan but not providing him anything to help him directly with managing his condition. The researcher's difficulty contacting the maintenance team for the MOTIVA system illustrates that Thennan has effectively been alone with his system since it was installed. That nobody noticed Thennan's 500 unread messages is worrying.