Table 1

Example of analysis process and illustrative quotes

CategorySubcategoryCodeCondensed meaning unitMeaning unit
Internal facilitatorsCoping strategiesIndividual approaches to self-managementMatter of fact approach to COPD
Acceptance of slowed pace
Learning approaches to manage symptoms
Working to retain activities of joy
Making the best of things.
There is no problem with her going on the train with the oxygen.
It just slows you down.
But I can control that… I go back to bed and I am alright the next morning.
I could settle my breathing down.
I didn’t get depressed about it (COPD diagnosis) or anything, no, I thought well you’ve got it, you’ve got to live with it. (P1)
It just slows you down. You have to perform at the rate your heart will let you, and you have to perform at the rate your lungs will let you. So you get slower and slower, year-by-year. (P1)
There is no problem with her going on the train with the oxygen. So that’s not a problem. It’s just a matter of putting her on the train and the oxygen will last for 8 hours. (P3)
Quite often I get attacks—mild attacks—during the night if the temperature drops suddenly and it’s cold, and I haven’t had the heater on or something enough that can set me off. But I can control that quite often—I get up and make a cup of coffee and sit up in the chair and turn the heating on and then I go back to bed and I’m alright the next morning. (P14)
…we did a lot of dancing and if I got really hot I’d have to go out of the hall into the fresh air, I felt like I was suffocating in the hall and I’d go out there and I could settle my breathing down by getting the fresh air outside. (P1)
So he still goes out and enjoys that, but he doesn’t dance every dance like he used to. (P11)
Knowing when to seek helpKnowing when to seek helpActing on warning signs
Recognising changes
Do not delay if you get unwell.
You can feel yourself going down.
Well self-management from what they’ve told me and what they’ve taught me is to live as comfortably as you can with what you’ve got—with your disease you’ve got and don’t buggerise around if you get crook (delay if you get sick). That’s it. (P15)
You’re either on a high or you’re low. You can feel yourself going down and I have a boost of prednisolone. I used to have 25 for 3 days, 12 and a half for 3 days and then five for 7 days. (P1)
External facilitatorsCentrality of a known doctorContinuity, trust and connectionCentral to support and coordination of care
Providing access when needed
Central position of support.
Doctor integrated as part of community.
You could not get an appointment with her because she was booked out all the time.
Converse impact of lack of access.
He’s (GP) my rock. (P9)
Well if (doctor) were to leave and go somewhere else I don’t know what I’d do. (P3).
‘with different things she’d (GP) say ‘I’ll ring (doctor 1) and talk to her about it. So they worked hand in hand’. (P12)
He happened to be one of my neighbours. He then asked ‘how is Rufus (my dog) going? How are you going? He even said “what’s your wife doing?” Your clothesline is chock-a-block every day’. Then he started talking, he says ‘What is it?’ I said, ‘look mate, I’m not happy, I want to go home’. (P7)
He said to me, if ever I can’t get in, tell them I’ve got to see him, yes. (P9)
My GP is really good. I say to her, it’s no good me making an appointment with you—I said this quite a while back—because I talk to the girls at the counter there and I’ve got to book in 3 months ahead. I said I’m not booking into you for 3 months ahead. I said I’ll ring you and let you know when I’m free. When I’m free….She puts me in every time. (P7)
They only had the one female doctor—and she’d been there forever apparently, highly regarded. So I got an appointment with her and she did all these tests on me and checked blood tests and everything. Found out that I was okay as such, and—but I could only access her every 6 weeks at the least. You could never get her if you were sick. Just because you were sick you couldn’t get an appointment with her because she was booked out all the time. (P3)
Health team going above and beyondPatients supported with inclusive accessGoing the extra mile to accommodate and care for patientsVisiting and providing support.
Giving patients their private number.
Facilitating access.
while I was in hospital (doctor 2) came in nearly every day and he didn’t have to (P13)
(Doctor) came round to my place and sat down with my medications. She took them up to the chemist herself and got them put into a (Dosette-box). So I go to the chemist, now, and pick them up in a (Dosette Box). (P8)
We had to see her (doctor 1) before we went on holiday and she’d give us her mobile number and ‘if anything happens, call me straight away’. (P11)
Well (wife) went overseas. (Doctor) said well what are you doing? I decided not to come … I’m going to family. (Doctor) said okay, give the family my number. Here’s some extra medication, and this is the instructions if something happens. (P11)
They let us (daughters of patient with COPD) sneak through the door around the other side, which brought us right in. Words cannot explain how great they were. We were so comfortable with all the staff that we could have asked them anything, every button they pressed on a machine, every tube they played with, they explained to us what they were doing. (P9)
Social supportCommunity supports assisting with independence
Family support
Peer support
Community support independent living and watching over and taking care
Family support with day to day and in recognising and managing symptoms
Community through pulmonary rehabilitation
The bus drivers are great, they lift me up because I have got oxygen.
He fell over in the garden, one of them lifted him up.
Family provide care and support—day to day and in time of need.
Family assist with recognition of symptom changes.
We look after one another and talk nicely and beautifully.
When I go up the street on the bus, the bus drivers, they’re great. They will lift me up on the thing, because I’ve got the oxygen, I can lift up and that. At the picture theatre I find, and everywhere I go actually, I find them very good’. (P6)
We get along very well with the maintenance fellows. (Patient with COPD) fell over in the garden out the side and one of the maintenance boys came up, lifted him up. (P5)
The other night the power went off. So that’s when you really need somebody … you’ve got to go and get an oxygen bottle and set it up to breathe. (P6)
Like at one stage what was about 12 of us in there with you (Mum, in Critical Care), (nurses) did not bat an eyelid. They (nurses) could see that the family support was what was keeping her going. (Daughter of P9)
(She) helps me put my socks on, tells me to get out of bed. Tells me not to drink too much. General company. It’s really what it is. (She) will pick very quickly if I’m tiring. You never say stop. Just one more thing. I get that a lot. So I’m running on the Plimsoll line all the time. Just one more thing, then we’ll go home. (P11)
Pulmonary rehabilitation also created an important community:
Oh my goodness, (pulmonary rehabilitation) is amazing. See, number 1, you go there for exercises. Number 2, beautiful to sit there and talk to the next person. They all got similar things. We’re talking about how someone feels shit. Somebody’s better, somebody’s worse. We just listen to one another and then naturally crack up a joke or something which they said laughter is better than medicine. We look after one another and talk nicely and beautiful. (P7)
Internal barriersLoss of identityImpact of restriction on social worth and contribution
Impact on mental health
Loss of social role
Mental health distress over unrelenting condition
Forced by COPD into early retirement/loss of loved work role.
Living a life of suffering.
I was that wrecked (by having to give up work due to COPD). It was unbelievable. I don’t think that anybody would have loved their jobs as much I loved mine’. (P8)
I thought, this is not worth it. What’s the use in living when you suffer like this even though my mind is clear and everything?’ (P7)
Oh, my—if I could turn the clock back, every person that told me of the person and the people that were suffering from it, I would listen to the first person and shake the shit away, wouldn’t touch it again. (P7)
External barriersLack of access and clear communicationLack of access and clear communicationHigh staff turnover
Limited alternatives
Lack of communication
Having to repeatedly explain
Do not even get to know the GPs, 18 months and they are gone.
I could only access her every 6 weeks/I have clashed, they have rang the ambulance and said go to hospital.
Don’t they read the files?
The next doctor comes in, you have got to explain it again.
You don’t even get to know (the GPs), 18 months and they’re gone. (P14)
But the new one didn’t like (local town) so they left. He was replaced by an equally good one who didn’t like (local town) and left. (P3)
They only had the one female doctor—and she’d been there forever apparently, highly regarded. … but I could only access her every 6 weeks at the least. You could never get her if you were sick. (P3)
I’ve gone down to see a doctor, and I’ve clashed, or whatever. So they’ve rang an ambulance and said, go to hospital. (P8)
I was in hospital 2 weeks ago and it wasn’t until a week after I got out with my GP that I actually found out what was the matter with me. (P14)
There’s been a few times where I’ve gone to emergency. You explain the situation—like, you’re having trouble breathing as it is. They’re trying to say oh, how long have you been like this for? Have (they) got any medical records? You’ll see what’s the matter with me is! Do you know what I mean? … and then the next doctor comes in for the next shift. Then they say oh, what are you here for? Talk to each other instead of having to ask the patients. (P8)
Then the next doctor comes in for the next shift. Then they say oh, what are you here for, and you’ve got to explain it. Don’t you read the files? Talk to each other, instead of having to ask the patients. (P8)
Sociocultural and economic challengesSocial isolation
Financial hardship
Impact of having newly moved to the region
Making choices about costs associated with chronic disease
I did not know anyone, you do not like to ask unless they offer.
Community clinic my only avenue because I did not know what was available.
Need somebody who knew me, need care straight away.
It is just another cost.
If we lived in housing commission you would be subsidised.
I wasn’t (admitted to hospital), but I felt I should have been, because I wasn’t coping. I wasn’t well enough to do my own food preparation… Because I’m fairly new and I’m not a local, I didn’t know anyone so you don’t like to be asking someone to do those sorts of things (shopping, food preparation) unless they offer. (P14)
The community clinic was the one that I accessed because they HAD TO take new patients. I mean they had more than they could cope with I think, but that was my only avenue at the time because I didn’t know what was available… I needed to access somebody who knew me- because asthma doesn’t go by the record sort of thing. You don’t know when—and when you get sick, you’re sick enough to need care straight away. (P14)
Financial impact was raised several times, with participants having to balance treatments choices as well as resource choices to stay well: ‘We chose to increase the temperature of the house by a few degrees. It’s just another cost’. (P11)
Requirements to replace stoves for oxygen therapy safety was another common added burden, and support for such measures perceived to be influenced by social circumstance: ‘If you were living in Housing Commission you would be subsidised, but because we were (self-funded retirees) … nothing’. (P6)
  • COPD, chronic obstructive pulmonary disease; GP, general practitioner; P, participant.