Background
Methods
Participant recruitment
Intervention
Quantitative evaluation
Data collection
Sample size and data analysis
Qualitative evaluation
Data collection
Analysis
Results
Patient demographics | ||||||
Age group | Number invited | Number recruited | Initial interview | Follow-up interview | ||
Male | Female | Male | Female | |||
40–49 | 0 | 1 | 0 | 1 | 1 | 1 |
50–59 | 2 | 2 | 2 | 1 | 3 | 3 |
60–69 | 5 | 4 | 5 | 3 | 8 | 6 |
70–79 | 3 | 7 | 2 | 4 | 6 | 5 |
80–89 | 2 | 1 | 1 | 1 | 2 | 1 |
Total | 12 | 15 | 10 | 10 | 20 | 16 |
Professional groups | ||||||
Group | Invited | Participated | Notes | |||
Community respiratory team | 5 | 5 | ||||
Anticipatory care services | 5 | 3 | 1 left the service | |||
1 did not reply | ||||||
Health service managers | 9 | 6 | 2 had limited knowledge of Light Touch service | |||
1 did not reply |
Quantitative results
Patient reported outcome measures
Use of healthcare resources
Light-touch service use
Use of healthcare resources
Qualitative findings
Theme | Quote |
---|---|
Establishing the ‘norms’ | Exploring the measurements in relation to symptoms |
“As I told you, it tells you, me the oxygen level. And I take it every day, you can have a look through there, I’ve got all the readings. As you’ll see I’ve got ‘okay’, well the ‘okay’ is that I wasn’t breathless when I took it”. (Patient 3) | |
Involving the family | |
“[name of wife] comes over and sticks it on my finger and then gets the sheet and fills it in”. (Patient 50) | |
“I have a look at mine sometimes. Er, about 92, 93 round about that”. (Carer 50) | |
The pulse oximeter as a guide to wellbeing | Confirming state of health |
“It [the oximeter] saves me worrying, getting up tight about my breathing and that. I used to panic, but not since I got that”. (Patient 26) | |
“So with having that [the oximeter] you’re, you’re not having to constantly call your practitioner to come out and make sure that you are okay, so it’s given us the reassurance that if it went too low then we phone [name of physiotherapist] and she‘d say ‘phone doctor’…which we did the last time.” (Carer 19) | |
Monitoring recovery | |
“It [oximeter] can give you a guide to how you're doing. If you're improving, or not improving, you're taking your antibiotics, you're taking your steroids and it's still going down then you know you're going to get in a bit of trouble”. (Patient 51) | |
Objective evidence | |
“When you do phone for help, the more information you can give them the better it is for the responder, when he comes out. So he understands what’s going on”. (Patient 51) | |
Enabling control and taking of decision | Using the oximetry to guide decisions… in conjunction with symptoms |
“Like I say, I can monitor it, I’m not under 91 [the pulse oximetry reading], em, my pulse is okay, so just concentrate on breathing, controlling your breathing…and you’ll be okay sort of thing as long as you’re not bringing up phlegm and, or something’s changed. I don’t have to get in touch with anyone; I can self-manage it, you know…” (Patient 4) | |
… or just relying on symptoms | |
“Er, it’s hard to explain, but if it’s like phlegm you’ve got there, it [chest] just feels quite tight and sore, and you just want to cough and you’re very breathless and the minute you do anything, it just drains you and makes you more breathless, so that’s probably a bad day”. (Patient 22) | |
Taking ownership and reducing reliance on the healthcare professionals | Not needing professional advice… |
“…I don’t like to be bothering people, eh? I try and manage myself if I can eh? Erm, I mean, but I mean basically as well, I’ve got everything here that the hospital would give me anyway, apart from oxygen. Erm, so I just try and manage myself without erm…I know now how far I can go, and don’t overdo things or you know what I mean? (Patient 31) | |
… or challenging professional advice | |
“She was really worried about me; so worried that she came to the house before she phoned me she actually came to the house for me to see if I was alright, to send me down to the hospital. But I was in North Berwick, so she phoned there and asked me, ‘Do you want to go into hospital?’ ‘No, I don’t need to go.’ ‘But you must! Your sats are so low.’” (Patient 47) | |
On-going monitoring (or not) | Nothing to record |
“No, I can’t be bothered! I’m a lazy devil! [Laughs] I suppose if I was ill I would, but…I’ve not got anything to record in it, ken? (Patient 11) | |
No more space in the diary | |
“I’m waiting for them [community team] coming but they never seem to come back. Today’s[reading] was 90…it’s not here, that’s finished [indicated end of diary]”. (Patient 7) | |
Keeping a diary is for the health professionals, not me | |
“The whole idea of this is for the nurses to look after me, if need be, rather than been taken into hospital, eh. Erm, so it’s a long term thing”. (Patient 31) | |
It helps me, even if the service I withdrawn | |
“Well, if it’s taken off me, I’ll buy one for myself, because as I say it gave me mair[more] confidence to take control …well to me it’s like a comforter now”. (Patient 45) |
Theme | Quote |
---|---|
A teaching tool | Oximetry and keeping a diary aid recognition of symptoms of exacerbations |
“It’s about the education that goes into identifying trends, and trends when they’re well and trends when they’re less well, and if they’re gonna then be able to use the tool to, yes, be able to monitor that, but then also be able to act upon that as well”. (Physio 3) | |
“When I go in and say to someone ‘Okay, so when you become unwell tell me what you notice.’ What they’re describing to me is an exacerbation that actually is quite set in. They can’t pick up those signs and symptoms earlier on. Um, and that’s something that I didn’t expect the symptom diary to do. I suppose at first I was underestimating how important the symptom diary might be, but for some people it’s actually been the teaching tool”. (District Nurse 1) | |
“It’s telling them ‘It’s [oximetry] not a diagnostic tool.’ I always say to them ‘It’s an add-on to help yourself manage.’” (District Nurse 3) | |
But not for everyone | |
“Er, it’s not a hundred per cent of people, that will want to use technology, and we have to respect that, but we also have to be able to offer, um, in appropriate parts of the patient journey, where it will assist the patients and the staff as well, to work in new ways, to combat, um, long term conditions”. (Manager 1)
| |
Relinquishing control (Balancing the tensions) | Fear of increased workload: monitoring impact |
“Um, and we had some just early stats on that, that showed that, you know, that we were increasing our numbers of patients, but the numbers of calls were not necessarily going in the same direction, they were staying quite static, so it meant that we could manage more patients, um, on using the technology but it didn’t increase the workload for the team, as much”. (Manager 1) | |
Some patients need professional reassurance that they were acting correctly…. | |
“We have the other, the other side of that where a patient will phone NHS24 [24-h telephone helpline] and say ‘These are the symptoms I’ve got, my saturations are eighty-nine’ And they [NHS-24] will phone an ambulance, and the patient doesn’t want an ambulance…they just want to tell someone ‘Is it okay for me to start my antibiotics with the symptoms I’ve got?’ So they say ‘Right, let’s get you into hospital.’ They don’t want to go to hospital, they just want to inform someone” | |
…. Others delayed seeking advice despite failing to respond | |
“And on occasions you’ll get somebody who phones to say they’ve just finished their course of antibiotics and steroids but they’re no better…I’d say ‘Well, actually I would like to know beforehand that you’re on them so that we can plan ahead, and if you’re not getting better then we need to put something in place’ Get the GP involved, um, do sputum samples, anything like that to try and sort of carry that management forward”. (Physio 4) |
Taking on self-management: the patients’ perspective
Establishing ‘norms’
“When I first got it I was checking, like you see on that [symptom diary], I was checking it like in the evening and then, eh, just to see what the difference was because in the evening, as I say, I’m getting more tired, more tired, more breathless, and I wanted to find out the difference, eh”. (031: Male/62 years)
“I feel I’m doing it, because I’m thinking it’s going to help them do research, but…I don’t see it doing me any good. It’s not doing me any harm”.(030: Female/74 years)
The pulse oximeter as a guide to wellbeing
“It [the oximeter] is telling you, rather than a doctor saying, you know, with a stethoscope or something like that, that can tell you you’re okay, you’re in the level of…you’re not feeling unwell.” (019: Male/65 years)
“It helps me, it gives me a bit of confidence. ….Any problems, yeah, because you’re actually going by what it says on the front of that [management plan]”. (026: Male/70 year)
“Mm…the reading actually”. (026: Male/70 year)
“Well, it’s obviously my symptoms because if they weren’t bad, I wouldn’t be checking [the oximetry]. I just use that to check what number I’m at and then decide.” (011: Female/71 year)
Enabling control and taking decisions
“…when I first realised I had to be on oxygen, I lost all confidence. Sometimes I wouldnae [would not] go out for six or eight weeks. Now I know, and I can take my reading, I can go out any day I want”. (010: Female/73 years)
“Well, I wouldn’t start the antibiotics right away. I would just see what I was like within myself, if I was coughing more, if my sputum was thicker or jellyish and maybe it was that I would start the antibiotics”. (045: Female/62 years)
“As long as I can breathe and I’m not struggling for breath it’s a good day”. (014: Female/69 years)
“I wouldn’t say there’s much difference; I have to be honest with you… it’s not made any difference to my lifestyle or anything”. (037: Female/80 year)
“Erm, they [the respiratory monitoring team] were controlling my illness …, whereas now I’m able to keep control of my illness. I know when I’m not well. I’m not having to depend on a box [the telemonitoring equipment] to tell me I’m ill. Now I do it myself so I feel a bit more in control now so…” (027: Female/48 years)
Taking ownership and reducing reliance on the healthcare professionals
“I just didn’t think there was any need to phone them, because there was nothing else they could have done, …, if I’d have went to the doctor, he’d have just gave me antibiotics, which I started. And if I had to phone the physio, she probably would have told me to just start on the antibiotics anyway, so I’ve done, you know, what I was supposed to do, I think”. (022: Female/55 years)
Stopping routine monitoring
“Well, at least that is written down for them [healthcare professionals], that’s how my heart beat has been going, and that’s how my oxygen level’s been going. It helps them to understand it, at least, I think so”. (003: Female/76 years)
Relinquishing control: the healthcare professionals’ experiences
Pulse oximeter as a teaching tool
“…one of the things that we’ve been using with the [community] team is to help support people, especially carers, recognise the symptoms and recognise the difference maybe between anxiety, breathlessness, and actually an exacerbation”.(District Nurse 1)
Enabling self-management: balancing the tensions
“I’ve had quite a few patients say to me, when I’ve got back in contact with them, ‘Oh, I started my antibiotics, I started my steroids because I scored two or more’, but they never phoned in and it’s ‘Oh, I didn’t want to bother you’”. (Physio 2)
“I think sometimes that’s the problem, where you get a patient who’s maybe self-managing better, they self-manage and they cut out the clinician completely then because they’ve become reasonably good at self-managing. But that patient then can sometimes fall off the radar”. (Physio 3)
“.. but where we’re different is that we actually instigate a lot of those telephone consultations as well, particularly if somebody has not long started on Light Touch. They may just be chugging along nicely if you like…” (District Nurse 3)