Table 2 Taking on self-management: the COPD patients’ perspective

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)