Social, cultural and historical context
Bilal is a 70 year old retired administrator, originally from Pakistan, who has lived in the UK for 23 years. He is Muslim. He lives alone in a ground floor flat within a low-rise council block. He originally came to the UK for work (his sister was already living in London) while his wife and five children remained in Pakistan. His wife died in January 2011.
Participant's experience of ageing and ill health
Bilal was well until a year ago when he suddenly had a severe stroke which dramatically changed his life. He spent two months as an inpatient on an acute stroke unit. Prior to the stroke, he was leading an active retirement – getting out and about in the local neighbourhood, driving to the coast every month, and going on holiday. Now he is stuck indoors. He cannot go out alone – he walks slowly but safely indoors with a walking stick but needs assistance outdoors.
After his discharge, Bilal had two falls at home in the first month. The first was in the kitchen. He lay on the floor for 15 minutes and tried to crawl to the living room, then a neighbour happened to visit (he was helping Bilal at the time). In the second incident, Bilal tried to stand from his armchair and fell. The same neighbour was in the flat cooking lunch in the kitchen (this neighbour has now moved away).
Bilal says he has no other health problems except some arthritis in left elbow and knees which does not trouble him much. The pharmacy delivers his medication weekly (for high blood pressure, cholesterol and pain relief).
People in this participant's life
Bilal keeps in touch with his children via Skype or phone. He has two brothers (and various nephews and nieces) who live nearby in London. Bilal sees quite a bit of one brother and his family. A third brother lives in the Middle East. Every day a family member visits from lunchtime till suppertime. They chat, talk about family affairs, do domestic tasks and either cook lunch or bring food from home. They also take him for a walk around the block of flats – out of the front door, keep turning left, including a stretch close to the main road, and back. On Sundays Bilal goes out with one of his brothers by car to their house or the market.
Bilal says he has no social network beyond his family, since when he worked he did shift work, so did not develop close friendships.
What matters to this participant?
As a strict Muslim, Bilal's religion matters greatly to him. His home is full of religious artefacts. He stopped attending mosque after the stroke. He used to go every Friday, but he no longer likes to go because he cannot pray in the correct way kneeling on the floor ("Some people, like, doing it on chairs, but that's not the proper way"). He does not usually pray at home because he has problems making sure he and his clothes are clean enough.
Bilal used to enjoy calligraphy as well as stitching and tailoring. He is wearing a smart kurta with some colourful embroidery he did himself. He also misses cooking for himself. He is sad at his loss of independence and freedom – in particular he can no longer go out to the park and shops as and when he wishes. He is bothered that his pendant alarm, which gives him much reassurance, will not work out of doors, meaning he is effectively imprisoned in his flat unless someone takes him out. His car still sits outside and a family member starts it from time to time to stop the battery going flat.
I WOULD LIKE... To walk early in the morning but cant go alone.
I WOULD LIKE... To prepare food myself. My hand 's movemet is problem.
Extract from Home and Life Scrapbook: wish list
Bilal bought a pedal exerciser last month, which can be used for arms or legs. He exercises for five minutes, two or three times/day. He describes how he worked hard in the rehabilitation unit with a view to regaining his independence:
"I start working in the hospital. The other people were doing ten minutes, five minutes. I was doing half an hour, one hour cycling and walking. That's why after one and half months I could come home."
Bilal says his life is now very limited:
"Sitting down all day, doing nothing. Nothing to do. Can't do anything. Nothing to do. Too many things to do but I can't do. Can't go outside, can't walk properly myself. Somebody will go with me then I go. TV. Nothing else. TV sometime, Skype sometime, the games are there [on iPad], I put some, install games. Nothing else."
Bilal says he plays computer games to pass the time, but also that this is "wasting time" – he would rather be out and about, leading the life he had before.
Bilal feels it would be easier to live with stroke in Pakistan because there is more social support (family and willing neighbours) available, and because it is more socially appropriate to ask for help from one's own children than from nephews and nieces. The warmer climate would be good for his body, he says, and he would also be able to afford more (private) physiotherapy. He plans to return to Pakistan to celebrate Ramadan in the summer.
Technologies in participant's home and life
Bilal has a pendant alarm and control unit (Tunstall). He says he always wears the pendant and shows the researcher how to work it, though he has not needed to use it as he has had no falls since it was installed. He presses the button once a month to check it works. There are several stand alone sensors, installed by the council 3-4 years ago but not linked to telecare: a smoke detector in the hallway, which Bilal finds difficult to turn off; and heat and carbon monoxide detectors in the kitchen.
Bilal has a pay-as-you-go mobile phone that he bought prior to his stroke. He always keeps it with him – in his shirt pocket during the day, and he leaves it by his bedside at night. He feels confident using it, and his brothers often call him on the phone to check he is OK. He also has a TV and DVD player.
Bilal has recently had a landline phone and broadband connection installed. Two of his nephews work in IT; they organised the connection, set up a gmail account, taught Bilal how to use his iPad, laptop and Skype, and are available to fix any problems. The iPad was purchased by a friend and given to him while he was on the stroke unit. He has hundreds of apps on it and appears to use them competently; many are games or for drawing, and he also has exercise video apps for his arms and legs.
Materiality and capability
Despite almost no function in his right (dominant) hand, Bilal is independent with personal care. He says he learnt to dress one-handed on the stroke unit, and his clothing has been adapted e.g. elasticated waistband trousers. However, he often drops items in the kitchen when he forgets and tries to hold them with right hand. Standing up from sitting is slow and unsteady; he can only push up with his left hand. He uses a kitchen trolley to transport drinks and meals from the kitchen to the living room – an awkward move that involves going backwards in a confined space.
A number of adaptations have been installed to enable easier movement at home e.g. chair and bed raisers, grab rails, toilet frame. Bilal says these are all very useful and make daily life easier. When he goes for a walk, he always goes anti-clockwise so he can hold onto a wall with his left hand if needed. He cannot write with a pen, but with the researcher's help he sets up the data collection tools for this research on his iPad, which he can use skilfully.
Bilal did not have telecare on discharge from the stroke unit because he had no landline. He had to install a landline specifically to enable telecare, and at the same time he decided to get broadband. He prefers his iPad to the laptop – it is easier to use, lighter, the battery lasts longer and it is more portable. He uses Skype daily to talk to his family in Pakistan via video link. He demonstrates this to the researcher and is very competent. He stays on line 24 hours a day to receive Skype calls, and also has a deal on his mobile where he can call Pakistan for 2p a minute (because one of his children's Internet connection is not functioning). He pays a small monthly sum (£3) for the telecare package.
Real incidents of using (or choosing not to use) an ALT
Blial has never used his alarm but in the few months since he has had it, he has never had occasion to consider using it. He anticipates that he will soon recover further and be able to cancel the subscription to the telecare service.
On the positive side, Bilal is technically adept even with his non-dominant hand, and has been able to learn to use a range of software packages and apps which help him keep in touch with his family and allow him to write, draw and pass the time. In addition, he has relatives who live locally and can install and help maintain his broadband connection. He has not used his pendant alarm but is capable of using it and greatly reassured by it.
Despite his capability and support from a very committed extended family, Bilal's life post-stroke is diminished in numerous ways. Like other cases in our sample, he has experienced a progressive (and in his case, very rapid) shrinking of his social, physical and cultural worlds. Doing and making things (cooking, calligraphy, sewing) are now impossible and computer 'games' seem pointless in comparison. In short, Bilal is bored and unfulfilled.
A striking theme in this case is how Bilal, a deeply religious man, became unable to practise his religion overnight as a result of his stroke. Islam requires physical rituals – washing the clothes and the body, adopting physical prayer positions – which have become impossible. He feels he is now not clean enough to pray to his God – a problem for which there is no technical fix.
In sum, Bilal's case illustrates how the presence of assistive technologies, and the capability to use them, provide only minimal compensation for the profound impairments brought on by illness. What is missing is the ability to create things, to fulfil even small personal goals (making a meal) and undertake cultural rituals. Neither telecare (which focuses on sensors and alarms) nor telehealth (which focuses on biomarker monitoring) offer much for the individual who seeks to feel autonomous, worthwhile and independent. Telecare is helpful – but is not a panacea.