Social, cultural and historical context
Lisa, aged 74, lives in a modern 3-bedroom terraced house owned by a Housing Association in a deprived area of a large city. She moved there 14 years ago when she was widowed. In her working life she was a manager of cleaning staff at the university. She can't remember when she retired on grounds of ill health, somewhere between 55 and 60.
Participant's experience of ageing and ill health
Lisa has chronic obstructive pulmonary disease (COPD), cataracts, type 2 diabetes (for which she takes insulin), high blood pressure, high cholesterol and anxiety. Her chest problems began with asthma as a child; she has had a home nebuliser for 15 or 20 years and home oxygen for about 5 years. She takes insulin injections plus 8 different tablets including prednisolone and an antidepressant. These are all in a dosette box, which Lisa refers to as "a shipping order." She says, "I don't know what half of them are for, I just take them".
Lisa has telehealth equipment (described below) for her COPD. She says that since it was installed, she is seeing more of the nurses and has kept out of hospital. She used to be in hospital every 6 to 8 weeks but has not been admitted acutely since she has had the equipment.
Living with her multiple chronic illnesses is difficult and time-consuming for Lisa. She gets up at about 8 am and the first thing she does it use the nebuliser. She doesn't feel well when she wakes up but the nebuliser helps her breathing. She measures her blood sugar level and writes it down in a notebook for the diabetes nurse to look at. Then she takes her medications. When seen for this research, she is taking antibiotics as well as all her regular medication.
Lisa's diabetes is not well controlled, perhaps partly because of the steroids she is taking for her COPD. She talks about a time recently when her blood sugar level was going up and down and she could not work out why. Eventually the diabetes nurse realised it was the "sugar free" cordial she was drinking. Her blood sugar has been much more stable since cutting out the cordial. She takes her blood sugar level every morning about 8 am but she doesn't take the insulin until 10.30 am, as instructed by the diabetes nurse. This timing seems to have worked because her blood sugar readings are now much lower.
Lisa says people with diabetes should be given a list of foods they can and can't eat (she's quite frustrated when she says this). "It's hard knowing what you can eat and what you can't eat - it's all guess work. It's bloody hard work deciding what you can eat and can't, especially being on your own, having ready meals. I can't stand in front of the cooker." She says she doesn't get this kind of practical information from the diabetes nurses.
When first visited, Lisa was about to go into hospital for a cataract operation. She was anxious about the operation but looking forward to recovering her sight as she had not been able to see properly for about 3 years. Lisa's cataract operation was successful and her sight improved substantially. She had put off the operation for years, partly because she hates hospitals.
People in this participant's life
Lisa's daughter, aged 55, lives two doors away and her granddaughter, aged 34, lives across the road. Lisa's daughter got her a house exchange to bring her to live near her. She says the neighbours are nice. She also has two sons: one lives 20 minutes' drive away and the other, aged 40, has a learning disability and lives locally. He has lived independently (with support from 24-hour carers) since the age of 30 because Lisa found she couldn't cope with him at home when she became ill. This son phones several times a day and Lisa provides phone support to him.
A number of different nursing staff - diabetes, COPD - are involved in Lisa's care. She says "I'm well looked after" - referring to the nursing staff and her family, who she says do "everything" for her. She also likes Gina, who works at the telehealth monitoring centre and phones her back if her readings indicate that something needs attention. Lisa comments "They [nurses, Gina] are very good. And I know them, which is a good thing." The diabetes nurse rings at least once a week or Lisa phones her if there's something wrong. The COPD nurse went to get the antibiotic prescription from the chemist for her on Saturday. Lisa says she really appreciates how good they are doing things like that. After her cataract operation, district nurses came 6 times a day for four weeks to put her eye drops in. She had tried doing his herself but couldn't manage it.
Lisa pays her daughter and granddaughter to work for her as formal carers. They come in every day for one or two hours to get her up and dressed. They don't stay a specific amount of time, just as long as she needs them, and she pays for that. Once a week they do a thorough clean of the house, and they also take her to hospital appointments. She says if she wants anything at all she only has to pick up the phone. Her sister-in-law comes twice a week to do the cleaning. At teatime Lisa usually has frozen dinners but quite often her granddaughter makes a pan of meat hash which lasts a couple of days, and sometimes a neighbour brings some stew in.
Lisa mentions that her mother is still alive in her 90s with dementia; she is in a nursing home. She rarely visits her, she finds it upsetting that her mother doesn't recognise her andit's difficult for her to get there. She also has a sister and brother whom she sees occasionally.
What matters to this participant?
Lisa's health matters to her, and her poor health gets her down sometimes. She is "sick of taking all the tablets - every time you get ill there's another one". She also doesn't like being dependent on people for all her needs. But she says it's marvellous that her relatives live so near and do so much, and she is very fond of the nurses who visit her. She says that apart from her health problems, she is happy with her life and there's nothing she would want to change. She worries about what will happen to her learning-disabled son if she dies.
Because of her severe health problems, Lisa goes out rarely (and not at all in the cold weather). She spends most of her days watching TV. Sometimes she and her daughter or granddaughter get a taxi to the market and take the wheelchair and the little oxygen cylinder. She says it costs "a fortune" in taxi fares (7-8 pounds each way) to go out to the shops. She does this about once a month in the warmer months. She is indoors most of the winter but says this doesn;t bother her. She likes getting to choose her own clothes, and clothes for her son with learning difficulties, when she can get to the shops. She has not been on holiday for many years.
Lisa's family are around a lot, and she greatly values this. On Thursday teatime after her granddaughter has done the shopping she makes a meal for Lisa, her learning disabled son, herself and daughter. They wash up as well. Lisa laughs that she's always got a headache when they've gone, she calls it her Thursday headache. She says it's because she's not used to everybody being there all at once.
Lisa says when she fell out with her daughter for a few weeks, she was out of her mind. Her granddaughter came in and out but Lisa said "I didn't half miss my daughter". She says she couldn't manage without them. When asked if she feels lonely, Lisa says no, not really. But she did when she wasn't talking to her daughter - she felt really down. "I think you need people round you, don't you? If only for a little natter, it's the loneliness that's the worst. I'm one of the lucky ones."
Lisa is very fearful. She has slept in the lounge for the last 12 months because, she says, she is too anxious to go upstairs to bed. She did this after being hospitalised for an chest infection. She says the nursing staff were "horrible" to her, she couldn't wait to get out. She says they insisted she walk without her portable oxygen and she couldn't do it. She describes some other episodes of alleged verbal cruelty and lack of compassion, and another episode in which she says she witnessed verbal abuse by a nurse to other patients.
Because of her negative experiences in hospital, Lisa says she is not going into hospital again - she wants to stay in her own home. She has told her children she wants to die in her own bed. She says she will go into hospital if they can do anything active to treat her, but she will not go in to die. She jokes with her children, "When I go, I'm going in that bed" (pointing to the single bed in the lounge). But she says she's not joking really, it's just that the kids don't like talking about it. Lisa sleeps downstairs, she says, because she can't be on her own. If she feels on her own she starts crying. She doesn't know why sleeping downstairs makes her feel less alone.
Technologies in participant's home and life
Lisa has a number of technologies to help her live, including both telehealth and telecare, as well as conventional aids and appliances. The telehealth devices include a blood pressure monitor and oximeter
Lisa has other medical devices, which she mentions when asked about telehealth equipment (she doesn't distinguish between the telehealth equipment and other devices): an oxygen cylinder and tubing, a blood sugar monitor, insulin pen and needles, and a nebuliser.
In addition, Lisa has various telecare devices. . These include a wrist alarm and wall alarm, near where she sits on the sofa. She also has a stair lift, a bed rail on the single bed in the lounge, a wheelchair (for trips out), and an electronically opening front door. Lisa mentions that she bought the stair lift herself because the waiting list with social services was too long and she needed it urgently. It was a reconditioned one, which cost her 800 pounds. Her nephew was working for the stair lift company at the time so he got it and fitted it for her. That was about 4 years ago. The Housing Association maintains it for her now, every six months.
She has just received a letter saying that she may have to start paying 5 pounds per week for her telecare equipment but she says it will be worth it just for the electronic front door opener.
Lisa is extremely sick and has multiple conditions, each of which affect the course and management of the others. For example, the cataracts are probably at least partly due to her diabetes and the steroids she is taking, and the steroids (for the COPD) may have caused or exacerbated the diabetes. The COPD interferes with her sleep, making her tired in the daytime. The nebuliser takes a long time to set up and 20 minutes to run. This laborious routine and the noise made by the nebuliser "drive her mad" sometimes.
She is constantly tired. In the afternoon, she has a couple of hours' sleep, especially at the moment because she has to be up early for the district nurse coming in to do the eye drops. She is sometimes unable to manage her own basic care needs. She can shower independently when her chest is all right, but most of the time she has her daughter helping her. Her daughter just stands outside the bathroom.
Lisa needs the oxygen (via nasal tubing) night and day. She only takes it off when her nose gets sore. She can sit on the settee without the oxygen but not move around the house. The main oxygen cylinder is upstairs so there is a lot of tubing along the hallway and into the lounge. She can move around the house (with some difficulty) with her portable oxygen cylinder. She holds on to the walls. She takes the oxygen off when she goes to bed but when she wakes in the night she puts it on again.
She can make herself a cup of tea or soup, or a sandwich, but these small tasks leave her exhausted (from field notes: "she makes a cup of tea which she manages without much difficulty although she is exhausted by the end of it. She is trailing the oxygen tubing and leaning against the kitchen surfaces"). She might make herself beans on toast or cheese on toast for lunch, and has ready meals most evenings.
Because of the difficulty carrying the oxygen, Lisa doesn't go out anywhere socially. "It's too much trouble when you've got the wheelchair and you've got to carry that and cart the oxygen around. So I don't bother. I go to our Bob's [son] for dinner now and again."
On the day of her cataract operation, Lisa has to be the first on the operating list because she is taking insulin for diabetes ("The operation has to be done in the morning when my blood sugar is low"), so she has to be at the hospital by 7.30 am. But because of her poor sleep, she is not normally fully awake till lunchtime so she doesn't know how she's going to get up for that time.
Lisa does her telehealth measurements with the researcher observing. On this occasion, she is coughing badly because she has a cold. The machine voice keeps prompting her loudly: "Please measure your SP O2". Lisa begins a short conversation with the researcher but the voice from the telehealth equipment interrupts, repeating: "Please measure your SPO2."
Lisa says the constant prompting is getting on her nerves. She says she can't do her SP02 measurements today because the equipment is not working properly. Importantly, she does not understand why it is not working or what she is supposed to do as the machine gives default instructions: "I can't do it, I'm waiting for them to come. It keeps saying "SKIP, SKIP" and when I skip it goes on to the blood pressure, but I need to do both."
She gets the oximeter and tries it again and she says it's still not working (it still says "SKIP"). She phoned them yesterday about it and the engineers are supposed to be coming today. She says she doesn't usually have any trouble with it. The oximeter is flashing green and it says her oxygen level is 92 and Lisa says that's about right for her. However the measurements are not getting through to Gina at the monitoring centre. The machine says again "Please measure your SPO2".
Lisa thinks the oximeter might just need a battery. The machine stopped working once before and it just needed a battery then. She says they didn't mention anything about batteries needing replacement when they installed the equipment. An engineer brings a battery when it is needed.
The blood pressure monitor seems to work, so Lisa puts the cuff on. "SKIP, please measure your blood pressure".
Lisa acknowledges she has no real understanding of the telehealth technology, though she is able to follow the routine of using it and sending the readings to the monitoring centre. "I've only had it about 6 months, I'm not a nurse, so I don't really know a lot about it. I just know what I've got to do and I do it". She uses her mobile phone alarm to remind her to take her insulin at 10.30 am.
She believes that the readings from her telehealth equipment go somewhere in the hospital. "I don't know where it goes to, it just goes, that's all they say to me." She is surprised when the researcher tells her the monitoring is actually done through social services. "I don't care where it goes to, as long as they look after me." She says that as far as she knows, her GP has never seen the readings and never phoned her up about them.
The machine gives a verbal response after taking Lisa's blood pressure: "Your blood pressure is 144 over 66, your pulse rate is 94". Lisa sees the word "OK" on the black box, so she presses the button to select this option. The machine says "OK, is your breathing worse today than it usually is?" Lisa presses "no". The machine says "Good, continue with your breathing techniques and take your medication as prescribed". Lisa presses "OK". The machine says "OK, your data will be sent to the clinic".
If Gina detects there is a problem with the measurements, she rings Lisa and asks for it to be re-done. If it's not right Gina tells Lisa to get in touch with the COPD nurses or her GP. If this happens, Lisa prefers to ring the COPD nurses. The COPD nurses may then ring the GP.
When asked whether she feels she has any benefit from the telehealth equipment, Lisa answers "Oh yes" without any hesitation. She explains, "I don't really know whether my blood pressure is high or not. I'm not a nurse. So they inform me whether it's low or it's high and they sort something out. But they do look after me."
Real incidents of using (or choosing not to use) an ALT
Lisa's use of telehealth and telecare equipment depends on a lot of people, many of whom she knows by name and has an ongoing relationship with. She thinks all these staff are very good, including the pendant alarm people. If she feels her breathing is getting difficult or her blood pressure is high, she presses the alarm and the monitoring staff call the ambulance for her. This last happened about 6 weeks ago. She says the paramedics come round and say whether she has to go into hospital or not. On the last occasion, she had called them because her blood sugar was very high, 24, and she was frightened and did not know what to do. They took her in to hospital. It was about 8 pm and she was there until 4am and then they said she could go home then.
Lisa is not wearing her wrist alarm when visited by the researcher. It is on the lounge door handle, next to her bed. She says this is because she has just got up and she doesn't wear it in bed because she is frightened of pressing it when she is tossing and turning. On another occasion she fell out of bed and the wrist alarm was at the other side of the room near the wall alarm. She couldn't get them and she ended up on the floor all night until her daughter arrived the next morning. She went to hospital because she had hurt her back badly in the fall. She says she's learned her lesson and keeps the wrist alarm on the door handle near her bed now. She doesn't like to wear it in bed for fear of setting it off accidentally.
Lisa is very sick with a number of illnesses for which there is no cure. The telehealth equipment, for example, cannot give her new lungs. It merely monitors how bad her existing ones are. Much of the care she needs is human care (e.g. putting in eye drops, going to pick up the antibiotic prescription, but most of all, personal care), not things that can be done by a machine. The humanising input of Gina, the monitoring centre staff member, is striking
Another striking feature of this case is the sheer number and variety of technologies which Lisa is required to operate - 12 are listed above. Whilst Lisa seems to cope reasonably well with these, there is considerable physical, technical and emotional work involved for her.
The incident of the 'not working' oximeter is most interesting. Lisa can see the reading (and understands its significance) but this reading is not getting through to the remote monitoring service, so they are in the process of arranging to send an engineer to fix the equipment. The instructions inscribed in the technology ("SKIP") assume that if the remote staff cannot see the oximeter result, it has no value. Yet the patient would like to take the reading because, despite her comment that she is "not a nurse", she understands what a good and a poor reading are for her personally. There is a hint of infantilisation here - the participant is expected to send the readings to the monitoring centre and await instructions.
The various assistive technologies in Lisa's home do not, in general, help her to live. What helps her to live is people. She is fortunate to have an arrangement where she pays close relatives to do as much or as little work around the house and personal care as she needs on any particular day. She knows the various 'telehealth/care' staff by first name - and she values the continuity of care from these familiar voices. These staff, though working remotely, operate as Lisa's personal 'bricoleurs' . Her daughter, granddaughter and nephew (who found and installed the reconditioned stair lift) are also operating as bricoleurs, adapting Lisa's environment and customising technologies to allow her to live (as far as possible) the life she wishes to lead.