Background
Methods
Study design and theoretical framework
Setting
Sampling and recruitment
Data collection
Analysis
Data management
Quantitative analysis
Qualitative analysis
Integration
Results
Participants
Characteristic | All participants (n = 82)1 | Participants who contributed qualitative interviews2 (n = 17) |
---|---|---|
Age (median (Interquartile range (IQR))) | 84 (79–89) | 82 (81–86) |
Gender | ||
Male n (%) | 30 (37) | 8 (47) |
Female n (%) | 52 (63) | 9 (53) |
Number of hospital admissions (median (IQR)) | ||
In 6 months prior to study | 2 (1–3) | 1 (1–3) |
During study | 1 (0–2) | 1 (0–2) |
Elixhauser comorbidity score (median (IQR)) | 3 (2–5) | 4 (3–5) |
Presence of cognitive impairment3 n (%) | 19 (23) | 4 (22) |
CFS4 (median (IQR)) | ||
Baseline | 6 (5–6) | 6 (5–7) |
12 weeks | 6 (5–6) | 6 (5–6) |
24 weeks | 6 (5–6) | 6 (5–7) |
AKPS5(median (IQR)) | ||
Baseline | 50 (50–60) | 50 (50–60) |
12 weeks | 60 (50–60) | 60 (50–60) |
24 weeks | 60 (50–60) | 50 (40–60) |
Income status n (%) | ||
Living comfortably on current income | 41 (50) | 9 (53) |
Coping on current income | 32 (39) | 8 (47) |
Difficult on current income | 4 (5) | 0 (0) |
Very difficult on current income | 1 (1) | 0 (0) |
Don’t know | 2 (2) | 0 (0) |
Prefer not to say | 2 (2) | 0 (0) |
Religious n (%) | ||
Yes | 60 (73) | 10 (59) |
No | 21 (26) | 7 (419) |
Missing | 1 (1) | 0 (0) |
Living status n (%) | ||
Lives alone | 43 (52.4) | 8 (47) |
Lives with someone | 39 (47.6) | 9 (53) |
Ethnicity n (%) | ||
White British | 70 (85) | 17 (100) |
White other | 2 (2) | 0 (0) |
Irish | 3 (4) | 0 (0) |
Caribbean | 4 (5) | 0 (0) |
African | 1 (1) | 0 (0) |
Other | 1 (1) | 0 (0) |
Missing | 1 (1) | 0 (0) |
Patterns of preferences and their stability
Importance rating
A. Extend life | B. Improve quality of life | C. Remain independent | D. Be comfortable | E. Support those close to me | F. Stay out of hospital | ||
---|---|---|---|---|---|---|---|
Percentage rating each preference as importanta | |||||||
Baseline (n = 82) | % | 43 | 81 | 86 | 89 | 77 | 82 |
12 weeks (n = 64) | % | 32 | 75 | 82 | 89 | 75 | 82 |
24 weeks (n = 64) | % | 39 | 76 | 79 | 82 | 68 | 78 |
Stability of importance ratingsb | |||||||
Stable importance rating at all measurements | n (%) | 33/54 (61) | 47/59 (80) | 54/63 (86) | 54/63 (86) | 51/62 (82) | 51/63 (81) |
Unstable importance rating: importance increased | n (%)c | 14 (23) | 7 (12) | 4 (6) | 5 (8) | 4 (6) | 6 (10) |
Unstable importance rating: Importance reduced | n (%)c | 13 (21) | 7 (12) | 5 (8) | 5 (8) | 9 (1) | 6 (10) |
Ranking of most important
Time point | A. extend life | B. Improve quality of life | C. Remain independent | D. Be comfortable | E. Support those close to me | F. Stay out of hospital | G. Other (specify) | Don’t Know | Prefer not to say | missing |
---|---|---|---|---|---|---|---|---|---|---|
Baseline n (%) (n = 82) | 7 (9) | 12 (15) | 8 (10) | 3 (4) | 13 (16) | 16 (20) | 6 (7) | 9 (11) | 3 (6) | 5 (6) |
12 weeks n (%) (n = 64) | 5 (8) | 6 (9) | 9 (14) | 7 (11) | 8 (13) | 13 (20) | 5 (8) | 5 (8) | 3 (5) | 3 (5) |
24 Weeks n (%) (n = 64) | 6 (9) | 7 (11) | 8 (13) | 7 (11) | 8 (13) | 9 (14) | 8 (13) | 5 (8) | 4 (6) | 2 (3) |
Percentage stablea (n = 57) | 17 | 11 | 0 | 0 | 25 | 19 | 0 | – | – | – |
Influences on preference stability
Influences that support preference stability
Conversely, several participants reported poor care experiences in hospital which also stabilised preferences in that participants wished to avoid repeated occurrences and therefore to stay out of hospital.‘No…No…. if I could be to the end of my days, if I could be looked after the way I am now, both in family and medically, I would say that, I would say I would be happy’P14, interview 3. Male aged 90 - 94 with stable preferences for staying out of hospital, overall preferences semi-stable
‘Oh, I didn’t like [being back in hospital] at all because from being in there before you know I remember thinking ‘o I hope I haven’t gotta come back here’. Um, so no it wasn’t … I suppose it isn’t a good experience going to hospital is it?’P9, interview 2. Female aged 85 - 89 with stable preferences for staying out of hospital, overall preferences stable.
‘I think when you go into hospital you lose a lot of your dignity, your self-reliance… (2 second pause (2s))…you become dependent on other people…. You’d like to be independent, and by losing that, you lose something from life…9s…’P3, interview 3. Male aged 85 - 89 with stable preferences for remaining independent and staying out of hospital, overall preferences semi-stable.
‘Researcher (R): And how would that [not having family around] change things for you?Participant (P): …Don’t know; be difficult to know really. But um [I] think you’re a bit more inclined to go into a [nursing] home … if you didn’t have a family around you, because at least there you get support’P12, interview 2. Male aged 80 - 84 with stable preferences for having family support and for place of care, overall preferences semi-stable.
‘R: you mentioned that staying out of hospital is very important to you, and would remain important to you if you were less well. Can I ask why that is?P: I think it disrupts the whole family. Not just me, but the whole family and I mean going into hospital as such isn’t an issue as such I’m not afraid of hospitals or anything like that, but I think it disrupts the families quite a lot. It causes people a lot of worry and it isn’t always necessary’P3, interview 3. Male aged 85 - 89 with stable preferences for supporting those close to him, and for staying out of hospital, overall preferences semi-stable.
‘Yes … I really didn’t expect … pneumonia to have knocked me back for quite so long a period of time … (3s) … because I was sure I’d get back to normal but I’m not.’P11, interview 3. Male aged 85 - 89 with stable preferences for remaining independent and improving quality of life, overall preferences stable.
‘Well, I want to improve so I can care for meself. That’s what I wanna do. But whether that’ll ever be possible I don’t know. I don’t know how you can improve, how you can improve things like that.’P4, interview 3. Male aged 80 - 84 with stable preferences for remaining independent, overall preferences semi-stable.
‘… no, no I mean my priority is now as I’ve said before is able to walk better and go out and do things, and um I don’t think that will ever change that’s my priority but it might take a long long time to achieve. A long time.’P2, interview 3. Female aged 85 - 89. Stable preferences for remaining independent, overall preferences unstable
Influences that support preference instability
‘….(4s)….Well I suppose they [priorities] have [changed] in a way, because I’m in a different position….(3s)… so the priorities are basically to get home and move around the house’P12, interview 1. Male aged 80 - 84 with unstable preferences for improving quality of life, stable preferences for remaining independent and overall preferences semi-stable
P: ‘[my preference is]… to be outside [hospital], and… to live a normal life…. But I don’t stand a chance any more.R: why do you say that?P: Well there’s such a good pattern of how things have gone. There’s no denying that I’m spending far too much time in hospital’P13, interview 2. Female aged 70 - 74 with unstable preferences for staying out of hospital, overall preferences semi-stable.
‘R: you mentioned that um being, being independent isn’t quite so important to you now… I just wondered why you feel that way?P: well, I know that I can’t cope on my own really but … (2s) … so … (3s) ... you know’P5, interview 3. Female aged 80 - 84 with unstable preferences for remaining independent, overall preferences semi-stable.
‘I mean I do often think how much longer can I do this, am I going to end up in a home because … you know when you sort of can’t get from there to there or there to there and you think ‘oh how long can I cope doing this’P9, interview 2. Female aged 85 - 89 with stable preferences for staying out of hospital, overall preferences stable.
‘… It [dying] doesn’t worry me, doesn’t worry me because I know it’s going to happen eventually. I mean everyone’s gonna go eventually aren’t they? So … (1.5s) … I’m no spring chicken... I’ve had a good innings’P5, interview 1. Female aged 80 - 84 with unstable preferences for extending life, overall preferences semi-stable.
Interview 2. ‘Well she’s got dementia and that’s taking its course, well that’s there. … and um she um … (3s) it shows. I try and visit her … once a week. We have lunch in the [care] home together, I have whatever everybody else is having. … Um ... and ... as I say I miss her quite a lot’Interview 3. ‘… Since you came last I think my wife was … in a care home um sadly she died…’P8, interviews 2 and 3. Male aged 90 - 94, with unstable preferences for supporting those close to him, overall preferences unstable.
‘I don’t want to go to in hospital, but I was in so much pain, I think in the end I thought to myself ‘Do what you like’P17 interview 1. Female aged 75 - 79 with unstable preferences for being comfortable, overall preferences stable
‘Oh well quite honestly I wouldn’t I wouldn’t want to go back to hospital again. But of course if I had to, well that’s different’P14, interview 3. Male aged 90 - 94 with stable preferences for staying out of hospital, overall preferences semi-stable.
‘No, you can’t think about getting worse, otherwise you’ll end up doing, getting worse, you know?’P2, interview 3. Female aged 85 - 89 considering future care preferences, overall preferences unstable.
‘I can’t see it [health] getting better cos obviously it won’t get better… it won’t get any better so I suppose with me it’s just a case of going on as long as you can like this every day hoping it doesn’t get worse. But one day it will get worse. In what way I don’t know, but it will won’t it, because what else is there.’P9, interview 3. Female aged 85 - 89 considering future care preference, overall preferences stable.
'You know my one aim is to get better. To start having a little bit of … enjoyment my retirement what’s left I don’t know how much longer is left but not to be a burden on anybody that’s my priority. And of course the second thing has already been dealt with I feel safe in the knowledge I won’t be put out on the streets I won’t be at the mercy of any of these care homes.’P7, interview 1. Female aged 85 - 89, preference stability not assessed.