Background
Methods
Aims
Objectives
Study design
This illustrative interview schedule was adapted for patients and professionals. | Other prompts: |
Participants will be asked a series of questions to elicit their perspectives. We will ask participants to talk about their experience of shared haemodialysis. Domains will include: beliefs about haemodialysis; experience of haemodialysis; and attitudes towards shared haemodialysis care. | • Knowledge about Shared Haemodialysis Care |
Patients and professionals were asked similar questions (adapted for purpose): | • Recent vs. long term problems and benefits |
Beliefs about haemodialysis. | • If thought about participating/opting out |
Can you tell me how you came to be on haemodialysis? | • Any exit strategy |
Prompts: what happened; how long ago; what for? (This will help ascertain trajectory). | • Self-care (as opposed to nurse-led care) |
What do you usually do when you come for dialysis? | • Consequences (benefits/risks) of taking and how to balance this out |
Experience of haemodialysis. | • What problems/concerns do you have about shared haemodialysis – both short-term and long-term |
What effect does haemodialysis have on your life? | • Mood, functional status, QOL |
Prompts: quality; what can do/can’t do; how are things different/the same? | • Support from others |
Attitudes towards shared haemodialysis. | • If interview has raised any concerns and if these will be discussed with the named nurse |
How you do you feel about participating in shared haemodialysis? |
Participants
Sample
Patients invited | Patients interviewed | Total interviewed | |||
---|---|---|---|---|---|
Patient level of engagement | Sheffield | York | Sheffield | York | |
Total (male) | Total (male) | Total (male) | Total (male) | ||
None | 4 (3) | 6 (2) | 3 (2) | 1 (1) | 4 |
Some | 1 (1) | 9 (7) | 1 (1) | 5 (4) | 6 |
Full | 5 (3)* | 1 (0) | 4 (3) | 1 (0) | 5 |
Total patients interviewed
| 10 (7) | 16 (9) |
8 (6)
|
7 (5)
|
15
|
Staff invited
|
Staff interviewed
|
Total interviewed
| |||
Sheffield
|
York
|
Sheffield
|
York
| ||
Nurse level of engagement
| |||||
None | 1 (1) | 1 (0) | |||
Some | 2 (1) | 1 (0) | 2 (1) | 1 (0) | |
Full | 2 (1) | 1 (0) | 2 (1) | 0 | |
Total nurses interviewed
| 4 (2) | 3 (1) |
4 (2)
|
2 (1)
|
6 (3)
|
Healthcare assistant level of engagement
| |||||
None | 0 | 1 (0) | 0 | 0 (0) | |
Some | 0 | 1 (0) | 0 | 1 (0) | |
Full | 0 | 0 | 0 | 0 | |
Total healthcare assistants interviewed
| 0 | 2 (0) |
0
|
1 (0)
|
1 (0)
|
Patient and professional recruitment
Interview setting and conduct
Analysis
Domain (definition) | Constructs included |
---|---|
Knowledge (An awareness of the existence of something) | Knowledge (including knowledge of condition/scientific rationale) |
Procedural knowledge | |
Knowledge of task environment | |
Skills (An ability or proficiency acquired through practice) | Skills |
Skills development | |
Competence | |
Ability | |
Interpersonal skills | |
Practice | |
Skill assessment | |
Social/Professional Role and Identity (A coherent set of behaviours and displayed personal qualities of an individual in a social or work setting) | Professional identity |
Professional role | |
Social identity | |
Identity | |
Professional boundaries | |
Professional confidence | |
Group identity | |
Leadership | |
Organisational commitment | |
Beliefs about Capabilities (Acceptance of the truth, reality, or validity about an ability, talent, or facility that a person can put to constructive use) | Self-confidence |
Perceived competence | |
Self-efficacy | |
Perceived behavioural control | |
Beliefs | |
Self-esteem | |
Empowerment | |
Professional confidence | |
Optimism (The confidence that things will happen for the best or that desired goals will be attained) | Optimism |
Pessimism | |
Unrealistic optimism | |
Identity | |
Beliefs about Consequences (Acceptance of the truth, reality, or validity about outcomes of a behaviour in a given situation) | Beliefs |
Outcome expectancies | |
Characteristics of outcome expectancies | |
Anticipated regret | |
Consequents | |
Reinforcement (Increasing the probability of a response by arranging a dependent relationship, or contingency, between the response and a given stimulus) | Rewards (proximal / distal, valued / not valued, probable / improbable) |
Incentives | |
Punishment | |
Consequents | |
Reinforcement | |
Contingencies | |
Sanctions | |
Intentions (A conscious decision to perform a behaviour or a resolve to act in a certain way) | Stability of intentions |
Stages of change model | |
Transtheoretical model and stages of change | |
Goals (Mental representations of outcomes or end states that an individual wants to achieve) | Goals (distal / proximal) |
Goal priority | |
Goal / target setting | |
Goals (autonomous / controlled) | |
Action planning | |
Implementation intention | |
Memory, Attention and Decision Processes (The ability to retain information, focus selectively on aspects of the environment and choose between two or more alternatives) | Memory |
Attention | |
Attention control | |
Decision making | |
Cognitive overload / tiredness | |
Environmental Context and Resources (Any circumstance of a person’s situation or environment that discourages or encourages the development of skills and abilities, independence, social competence, and adaptive behaviour) | Environmental stressors |
Resources / material resources | |
Organisational culture /climate | |
Salient events / critical incidents | |
Person x environment interaction | |
Barriers and facilitators | |
Social influences (Those interpersonal processes that can cause individuals to change their thoughts, feelings, or behaviours) | Social pressure |
Social norms | |
Group conformity | |
Social comparisons | |
Group norms | |
Social support | |
Power | |
Intergroup conflict | |
Alienation | |
Group identity | |
Modelling | |
Emotion (A complex reaction pattern, involving experiential, behavioural, and physiological elements, by which the individual attempts to deal with a personally significant matter or event) | Fear |
Anxiety | |
Affect | |
Stress | |
Depression | |
Positive / negative affect | |
Burn-out | |
Behavioural Regulation (Anything aimed at managing or changing objectively observed or measured actions) | Self-monitoring |
Breaking habit | |
Action planning |
Results
Undertake shared care | Undertake some aspects of shared care | Opt out of shared care | |
---|---|---|---|
Sheffield5patient, Sheffield7patient, Sheffield8patient, Sheffield9patient, York1patient | Sheffield6patient, York5patient, York6patient, York9patient, York12patient, York15patient | Sheffield3patient, Sheffield10 patient, Sheffield11patient, Sheffield20patient | |
Knowledge
| “we’ll say my potassium’s ok or my calcium’s alright, my Hb, my iron…we’ll compare like 'oh what’s yours like?’ Sheffield7patient
| “they come in, get all the bits and pieces they need…they seem to cope alright with it so I take it does work” York5patient
| “they just want to turn up and switch off” York20patient
|
“you didn’t know what to do with it anyway so basically you just laid here and you didn’t know, you now thinking god what’s happening to me…then we started talking to each other…so we started asking questions with each other, and so it opened it up…whereas before you used to come and you’d say good morning, turn your telly on and go to sleep.” Sheffield8patient
| “you’re not just laying there wondering what’s happening” York5patient
| “everybody’s different and their views are different and perhaps how much information and processes they can manage at once” Sheffield3patient
| |
“some people think…you’ve got to do everything and we’ll say to them 'no you haven’t, you do what you want to do and what you’re capable of doing’…I don’t want to be forced into something what I don’t want to do…I’ve got no intentions in doing it at home you know” Sheffield8patient
| “it’s quite empowering isn’t it to be able to do it you know, sort yourself out, you know and I’m not somebody who sits around you know” York6patient
| “although I gave insulin to myself, because the needles were different you know and thinking am I gonna get it in” Sheffield3patient
| |
“all the other things about being on dialysis brings you know, osteoporosis and system not working properly, problems with bowels, sickness, cramp, you know there’s so many things that you have to deal with apart from having to come here three times a week” York6patient
| “but with shared care there’s not going to be somebody there all the time is there?” York20patient
| ||
“A unit’s opening up next door hopefully where we’ll be able to come and go more or less when we want, is that what it is?” York20patient
| |||
Beliefs about capabilities
| “they don’t pressure you to do anything what you don’t want to do” Sheffield5patient
| “I used to think gosh that’s good, I’d like to do that, to be independent” York12patient
| “elderly patients…they’re frightened” Sheffield3patient
|
“a sharp needle you feel it go into you, but once you’ve got this button hole done, the blunt needles just slip in…it’s like putting them into butter, you know it just slips in really, really good.” York1patient
| “it makes me feel I’m in command, more responsibility” York12patient
| “panicking…am I doing this wrong” York20patient
| |
“don’t know 3 to 6 months” York1patient
| “there’s enough problems with the nurses doing it without you know the problems that I or anyone might cause to themselves” York15patient
| “I just stopped… can’t be bothered anymore” Sheffield10patient
| |
“I’m a technophobe, and that’s like a computer to me you know…but once you get used to doing it and you have a sheet to follow.” York1patient
| “when I saw you doing your needles I thought 'oh my god, am I going to have to do that?’…she says 'no, no, no’…and then a couple of month on, maybe because he knew he didn’t have to do it, he started doing it for his self” York5patient
| ||
“I’m always putting my long lifespan of my fistula down to me needling myself, I’ve always thought that’s got to be why, cause not many people get 16 years out of a fistula” Sheffield7patient
| “a bad day when I come in and I just think 'just let me get on that chair and let myself go to sleep’” York6patient
| ||
“if someone’s 80 something you know you wouldn’t even go there” York6patient
| |||
“Hell of a lot to learn” York6patient
| |||
Skills
| “you know what to look for…if your venous pressure gets too high…it’ll set the alarm off..it could be a kink in the pipe…tape could’ve came undone…your needle might just need pulling out a little bit.” Sheffield5patient
| “no respect to the nurses are doing different fistulas all day long aren’t they?… it doesn’t hurt when I put them in, there’s no pain whatsoever, I don’t feel anything, I know the tender spots and I know the bits that hurt” York5patient
| “put needle in myself but I couldn’t do it” Sheffield11patient
|
“I thought there’s no way I’m gonna even attempt it…they said about this button hole technique where you use a blunt needle…same track all the time, same site, obviously it scabs over, but it’s a bit like a pierced ear…just slide into it…they said you can’t bump it…it won’t go anywhere…I get on with it fine” Sheffield5patient
| “I don’t like the idea of working with one hand you know like when you’re blood pressure with one arm…it’s frustrating” York6patient
| “would like … but I can’t read or write” Sheffield11patient
| |
“she did the actual tunnelling, she made the button holes to begin with sharp needles…for a month…then she said 'right, now we’re going to put the blunt needles in’ she said 'and you’re going to do this yourself’, and I did and it was very easy.” York1patient
| “I’d love to come in and line 10 machines…cause that’s how you learn…when you’re just doing one every so often you don’t remember…but you can’t do that cause of hygiene” York6patient
| “she held it with me because I have these shakes sometimes, but that’s stopped me from doing it” Sheffield11patient
| |
Environmental context and resources
| “this year I went across…it was a private place…the Dr said to me 'no, I’m sorry we don’t do button holing’ so I said 'well I’m sorry I do’, because the nurses had given me all the needles and I was adamant I wasn’t going to lose these cause they were so good…he said on your head because of infections…the thing that amazed me was every morning…I had a crowd of nurses round me, they were all interested to see you know how it was done” York1patient
| “I try to disassociate dialysis with my life and the less time I can spend here the better” York5patient
| “not safe..if anything happens I would prefer to come to the hospital” Sheffield11patient
|
Interviewer “before you got involved in the shared care, would you have looked at the folder at all?” Participant “no, no, I always thought that was purely what the nurses used” York1patient
| “it was quite daunting walking in the first time…you don’t know what’s happening and everyone’s looking at you, get these needles out” Sheffield6patient
| “you’ve got fixed times for your transport obviously, well you come in, a nurse puts you on the machine, your transport turns up and you go home, there’s no messing about with anything anymore” Sheffield10patient
| |
“I think I’d be more isolated at home” Sheffield8patient
| “I think I’m past that, I just want it now, I want a kidney” Sheffield6patient
| ||
“because if something goes wrong I’ve got the nurses on hand, whereas if I was at home and something went wrong he would have to lift a phone or do something to the machine and I think he would panic, and lose his breath…so it’s better to come in” York1patient
| “the idea is to reduce the numbers of nurses is it?” Sheffield6patient
| ||
“I wouldn’t want to spend that time setting that machine up” York15patient
| |||
“with all the messing about…so I’d had seven hours messing about with this one way or another, waiting about, hanging about, it’s not pleasant, it’s not nice” York6patient
|
Undertake shared care | Undertake some aspects of shared care | Opt out of shared care | |
---|---|---|---|
Sheffield1professsional, Sheffield2professional | Sheffield3professional, Sheffield4professional, York1professional, York4professional | York3professional | |
Knowledge
| “They didn’t know about their medication. They didn’t even know about their own care, their fluid restriction or anything… totally dependent on medical staff…here the patients are more educated. They’ve been given more about their care, their diseases…and advice, the treatment, why they’ve got renal failure. It’s a big difference here in their care.” Sheffield1professional
| “sheer process of dialysis for the patient their ability to take in information” Sheffield3professional
| |
“So they’re talking about their past, their non-dialysis days, what they’ve been doing, what they’ve been eating…we know more about them and the patient gets more from us…this is a two way combination” Sheffield1professional
| “it’s a learning process for each individual constantly” Sheffield3professional
| ||
“they used to come to dialyse for 31/2 hours and go to sleep …now they’re discussing with each other…you will hear them discussing about their potassium, phosphates, Hb so they know more about themselves…they go online check their results, ask more questions.” Sheffield1professional
| “patients want to learn more about their selves than they did before” Sheffield4professional
| ||
“I’ve had lots of things said…’it’s nothing to do with me, it’s not my fault, I come here, you dialyse me that’s your job, I don’t want to know’, right through to the 'I want to know everything about it, I want to know everything you’re doing and I want an explanation for everything you do’.” Sheffield2professional
| “it must be awful, you’re not in control of what’s happening to you” York4professional
| ||
“it’s good for the staff as well to keep on track of things…cause everything changes all the time” York1professional
| |||
“we have an excellent renal service…anybody is encouraged to talk to anybody about anything…if you’ve got a concern about a patient and you want to ring a dietician, you ring the dietician” York4professional
| |||
Beliefs about capabilities
| “it was difficult to teach a patient who didn’t know anything about their own care” Sheffield1professional
| “If they were more compliant and understand the process more” Sheffield3professional
| “the little lady who thought it was more important that it looked neat than that is was clean” York3professional
|
“I’m not a dietician…the dietician are always there, give them a ring and clarify, get the leaflet for the patient which gives me an idea to read it as well… improve my knowledge… if the senior nurses are there, the sisters are there, the ward managers are there, which have more experience…will answer my question as well which will be good for me.” Sheffield1professional
| “we’ve had patients with learning disabilities that you would look at and thought “oh I don’t think they’d be up to doing this’ but have got on really well” Sheffield3professional
| ||
“the patient even knows …who will be the best to sort it out..they know about their condition, who to get and who not to get.” Sheffield1professional
| “they’re more confident..they think oh I could do that and give it a try” Sheffield4professional
| ||
“a patient may challenge you but it’s also sometimes a request for information… so “well why am I doing this?’ and 'why do you want me to do that?’ may not be a challenge, it may actually just be a simple way of saying 'explain it to me a little bit further’.” Sheffield2professional
| “there’s a fear…because it’s an electronic machine.. I reassure them there’s nothing that can go wrong.. it’s not going to damage anything…or blow up” Sheffield4professional
| ||
“they all say 'yeah it’s great’ they feel so much more confident and they feel in control” York4professional
| |||
“patients should have the choice” York4professional
| |||
Skills
| “so we show the staff are training as well as the patient” Sheffield1professional
| “They’ve got phobias about needles” Sheffield3professional
| “some people are just fine to come on and do whatever you tell them” York3professional
|
It can be challenging “especially for the more junior members of staff who haven’t got the years of experience behind them” Sheffield2professional
| “most of them have the ability and the skill to do a certain amount of it” Sheffield3professional
| ||
“they’ve got more control over what they’re doing” Sheffield4professional
| “you need it even with the staff, cause you see people cut corners here and there” York3professional
| ||
“you would have to put in place some sort of monitoring, revisiting, retraining, reassessment system, people do, we all you know, nurses slip back in habits don’t they” York4professional
| |||
Environmental context and resources
| “explain to the patient that it isn’t enforceable to go home…they were thinking that the NHS is going into crisis, they’re getting rid of the staff and most of the patients have to go home…their health will be in danger because the nurses won’t be there” Sheffield1professional
| “weren’t encouraged to do anything for themselves” Sheffield4professional
| “it was just a conveyer belt and all the patients basically had the same prescription and the same flows…it was just a real kind of industrial way of dialysing people, there was very little personalised care and you had no time to spend with them” York3professional
|
“they’ll take them round to show, let the patient examine the machine, just sit down next to the patient, talk to the patient, you know take the anxiety out of it…Some of them haven’t seen the machine before.” Sheffield1professional
| “it was very much you’re the patients, we’re the nurses, we look after you, we do it all for you” York4professional
| “it’s really sort of embarrassing some days when you realise you can’t, you’re just doing the absolute bare minimum” York3professional
| |
“the prescription that we keep…some patients think that that’s ours…if it’s left on the table…they want to look at it…they can feel the difference if something’s dropped or something’s too high” Sheffield4professional
| |||
“before we bring the change for any equipment, like we introduced the staff training, the patient has been introduced to it as well.” Sheffield1professional
| “there’s always somebody around if an alarm goes off…so you have to take a step back and wait for them to look …and they follow like the chain that we’ve said check this first and then that…and we’ll say 'oh what’s wrong with it?’ and they know, they can reel it off” Sheffield4professional
| ||
“We still run a production line dialysis unit and we still open at X and we still shut at Y, and the pressures are in actually finding time to allow people to take their time” Sheffield2professional
| “spending anything over the allotted time with that patient was always difficult” Sheffield3professional
| ||
“Perhaps is where nursing sometimes gets itself wrong, you get to a senior position and you’re expected to sit in the office pushing pieces of paper about when in actual fact really, after 20 years experience perhaps we should be out on the ward, we’re passing on that knowledge and experience” Sheffield1professional
| “there’ll always be patients that aren’t suitable to go home” Sheffield3professional
| ||
“the dialysis population is growing considerably all the time, so we’re always looking for ways to try and deal with that” Sheffield3professional
| |||
“the training process was cut down to 8 weeks from 6-12 months…it’s been really refined…to take them from shared care in the hospital to care at home it could be three weeks” Sheffield3professional
| |||
“I find that I’ve been there an hour and I was only scheduled for half an hour, but I don’t think, you’ve got to listen to what’s being said” Sheffield3professional
| |||
“It’s just the time and the staffing situation…sometimes it’s impossible to do it” York1professional
| |||
“it’s much harder for a main unit…because all, most of the acute work…they struggle with their daily workload…it’s harder for them to have a comprehensive programme or people to be dedicated towards spending time with patients” York4professional
| |||
“the chap that was months and months we just couldn’t leave him…if you’re stood there have an hour watching him try and put his needles in, your stood there…because he wanted to try” York4professional
|