Background
Methods
Individual interviews
Recruitment, sampling and consent
Participants in individual interviews (N = 26) | |||
---|---|---|---|
Professional backgrounds
|
N
|
Gender
|
N
|
General practitioners | 4 | Male | 11 |
Practice nurses | 2 | Female | 15 |
Nurse specialists – diabetes | 5 | ||
Nurse specialists – Parkinson’s | 2 |
Location of practice
|
N
|
Support worker | 1 | London | 8 |
Dietician | 1 | North of England | 6 |
Physiotherapist | 1 | Scotland | 12 |
Clinical psychologist | 1 | ||
Medical specialist – diabetes | 1 | ||
Medical specialist – elderly care | 1 | ||
Medical specialist – neurology | 6 | ||
Medical specialist – psychiatry | 1 | ||
Participants in Group discussions (N = 30) | N | ||
Regional group of (medical) specialists | Parkinson’s | Scotland | 11 |
Regional group of nurses/allied health professionals | Diabetes | Northern England | 6 |
Regional group of nurses/allied health professionals | Parkinson’s | Scotland | 3 |
Mixed professional group, working in same area | Diabetes | Scotland | 7 |
Mixed professional group, working in same service | Diabetes | London | 3 |
Data generation
Group discussions
Recruitment, sampling and consent
Data generation
Data analysis
Results
Aspects and elements of success
Quotation | Source |
---|---|
The ideal success is someone you have a good relationship with, who at the same time is well, is ticking all the boxes for excellence in biomedical control, and taking full responsibility, and keeping themselves well and healthy | Philip, General practitioner, northern England |
I think if the person feels more in control and happier. I probably should say more that they’re getting better HbA1c and hitting more targets… to get the actual QOF with this being a GP practice. But my initial desire is to make the patient feel better and they’ve got control over things and it’s their condition, they’re managing it. | Pippa, Practice nurse, northern England |
Somebody that maybe needs input from me less than they did originally… that would be a success. Success would be somebody that believes, that they can actually feel more confident to manage their diabetes, it’s important in their lives, and they can walk out of there knowing when they need to ring me… And I think from a sort of medical perspective… from a biochemical perspective, has the HbA1c been reduced, have the cholesterol and blood pressure reduced?… Because some people believe they’re doing amazingly well, but maybe they’re not… So I think that will be the three things: less contact; they’re feeling well in themselves (better in themselves), and the biochemical changes. | Shania, nurse specialist, diabetes, London |
I - So in terms of what success looks like for your team, how do you tend to evaluate that? | Mixed discussion group, diabetes, London |
P - That’s an interesting question. Our commissioners are very focused on HbA1c so they’re very much focused on biomedical outcomes and… because that translates into money… so that tends to be what we’re judged against in the main. But we also obviously would measure things like psychological functioning, social support and psychiatric morbidity as well, and where - we’re currently in the process of doing an evaluation of the service which would include all of those measure and we’re going to just… I guess come up with a quality of life index as well, so we’re working with our health colleagues in doing that. So we’re being forced to look at the biomedical side of things, the service use but our own focus would be to allow people to engage better with their health care that they can be independent, healthy people in the future, who don’t end up in hospital. |
Excerpts are presented in the order they arose in the interview | |
---|---|
Interviewer: | … can I ask for some examples or case histories from your experience, to illustrate what your idea of success might look like? |
Participant: | Oh, gosh, right, yeah. So I mean… I guess that can vary enormously from the type of clinics that we’re doing. So for instance, in an antenatal clinic… success is a healthy live baby and healthy mum… And then, of course… somebody with a chronic condition where you’re just supporting them living with the condition… We, of course, as health professionals, want someone to have as best HbA1C to reduce the risk of complications in the long term, as well as to be able to live a happy, healthy life, as it were… The people we get are more and more complex… We’re never going to achieve the ideal HbA1C for everyone… So if we can even just chip away and support them to live better with their diabetes we’re hopefully doing something to support them in a positive way… |
Interviewer: | … Can you think of some examples, again from your own experience, to illustrate what an unsuccessful partnership with a patient might look like? |
Participant: | I think one where there’s no connection, or where the patient probably isn’t at the right place to have a discussion about managing their diabetes, for whatever reason… We do have consultations where we think “Oh that didn’t go very well”… when you feel like you’re not getting very far with someone for whatever reason |
Interviewer: | … So thinking about the things you’ve said… can we think about how we might define the concept of success? |
Participant: | Gosh, yeah, that is so hard, isn’t it? Because the concept of success, I suppose, is about… the people with diabetes that had long term outcomes, the effect on the NHS, all those sort of things … What you really want to achieve is to be able to support someone to self-manage their diabetes so that they do not get (or they reduce the risk of getting) long term complications… And that’s success. But success on a day-to-day basis is about chipping away, and having a long term - and motivating people to take some action about their diabetes… |
Interviewer: | … Do you think patients would agree with how we’re defining success here? |
Participant: | Well no, not necessarily. Because success – another success could be for instance [with someone who is] having a really hard time with their blood glucose swinging all over the place [that] they have much more stable blood glucose levels that enables them to feel more confident about living their life without the risks of feeling unwell in the morning because their blood sugars are high, or having hypos in the middle of work situations, which are incredibly embarrassing… So that would be incredible success for an individual. That would be success for us, too, but then we’re always wanting more, aren’t we… for the long-term risks of complications? |
Interviewer: | … examples or case histories from your experience of something that would illustrate your idea of success? |
Participant: | Erm. I guess that depends on what we’re doing and it also depends what stage of the condition the patient’s at. So … for Parkinson’s I would say that there are four stages of the condition … So what counts as a successful encounter… depends on what the issue is for that patient at that stage, and my guess is that you might define success and failure differently for different scenarios. Although I dare say there will be some features that would be common to all. |
Interviewer: | And can you say a bit more about what they might be, from your experience? |
Participant: | Erm. I suppose, if you’re looking at generic things, I suppose it would be issues with communication: honesty, accuracy … building and maintaining a relationship. From a patient’s point of view I think they value seeing someone who knows about their condition … I suppose a successful consultation has to have sufficient time, but it also has to occur at the right time… Those are the things that spring to mind. … |
Interviewer: | … do you have any examples … of what you would describe as maybe a successful early encounter?… |
Participant: | I think you would have to ask the patients about that, you know. What is success from my point of view might be rather different from success from their point of view… One encounter that I recall… was a… worker in his 40s with a bit of a tremor, and I told him I thought he had Parkinson’s Disease. He didn’t like that [and went off and saw a neurologist elsewhere who] said it was probably a form of essential tremor, so he was very happy… Unfortunately his symptoms got gradually worse [and the other neurologist] eventually agreed that he did have Parkinson’s Disease… So now, I don’t know, was that first encounter a good one or a bad one? I was right, and I love being right [laughter]… but I told him information that he wasn’t happy with, and which maybe he wasn’t ready to accept at that stage. So I don’t know how you judge whether that was a good encounter or not… |
Interviewer: | … would you be able to define success in your view of encounters with people with Parkinson’s [in the early stages]?… |
Yeah, so communication, I suppose accuracy in the information that we provide… the way in which it’s communicated, ‘cause I guess the quality of communication will always make a difference to how people take things in. And the back-up available. I suppose that’s the other thing… quality … isn’t necessarily [just] about what happens during that appointment … For example, if somebody is complaining that their speech has deteriorated and they want a drug to make that better, if I say “Well, no drug is going to make your speech better…, but we’ll refer you to a speech therapist”, they may be disappointed but they are at least going to see someone who can maybe advise them about that symptom and help them cope with it better… | |
… In a sense, I don’t have a desired result really, other than the best for the patient. It has to be the patient’s desired result really, not mine. |
Multi-morbidity could extend or complicate assessments of success in all three broad categories of aspects and elements of success. These comments are from an interview with Lucy, clinical psychologist, diabetes, London.
|
For example, someone I saw with diabetes and heart disease… So he was, I suppose, quite suicidal really when I saw him initially, and by the time we’d finished much more assertive, confident and the suicidal ideation had diminished, able to have constructive relationships with family members, so that was a good outcome. However, the medical conditions sort of were either maintained or slightly deteriorated, so there wasn’t really progress on that front… |
I supposed there’s staged outcomes that we see sometimes as – sometimes you’re treating the depression and anxiety first before they’re in a position to feel motivated enough to then self-manage appropriately…. And the next stage might be to form a healthier relationship with their health team, so just thinking about the rapport they have and how confident they feel about asking questions in consultations, so you’re kind of facilitating that bit and then they might be in a position to start addressing their long term condition in a more helpful way… |
Another factor [relevant to success] is patient co-morbidities because that comes up a lot. So they’re roughly juggling more than one long-term condition. And so if that other long term condition starts to deteriorate it impacts on their – but even ability to come to appointments regularly, and the number of medications people have to take, and not understanding what’s for what. I’m really passionate about the idea that often people need some kind of co-ordinator figure in order for them to self-manage well and that’s not – we haven’t quite got there yet in health care systems… I mean there’s a lack of joined up thinking across long term conditions and that’s not compatible with the reality which is that patients are juggling long term conditions - that’s often a barrier to successful outcomes. |
Success in terms of health, well-being and quality of life
-
Biomedical markersBiomedical markers featured particularly in the interviews relating to diabetes. For example:One of the main parts of our role, from the diabetes nurse perspective, is trying to improve patient’s glycaemic control… but the role is widening, because we do local blood pressure and cholesterol, so [success is] trying to reduce the risk factors for later on complications. (Shania, nurse specialist, diabetes, London)Mentions of biomedical markers were usually nested within broader ideas about future risk and/or people’s wellbeing. This nesting was particularly evident in discussion groups when participants discussed alternative perspectives on the purpose of support for people with long-term conditions.
-
Symptom control‘Adequate symptom management’ and the prevention of symptomatic decline or complications were widely referred to as key aspects of success. For example:I suppose the kind of medical agenda in coming into encounters with people with Parkinson’s Disease is very much to improve their symptoms and to make them less stiff and slow. (Matthew, medical specialist, elderly care, Scotland)I think symptom control would be a success, like if someone is coming in with significant symptoms around their diabetes, like if they’re getting up at night to pee. If we can reduce that, they come in saying, “Oh I’m not weeing as much at night; I’m not as tired.” So symptom control - people do notice that one (Maureen, dietician, London)
-
Getting on with daily lifeSymptom control was often connected with a broader interest in people being able to get on reasonably independently with their daily lives and to live as ‘normally’ as possible. Some participants emphasised these broader concerns as they discussed success. They sought to help people to manage and maintain their valued activities, roles, settings and positions, and described success in terms of being ‘able to keep them at home or keep them in the kind of care environment that they want to be kept in’ (Angela, nurse specialist, Parkinson’s disease, Scotland) and‘keeping people… in the lifestyle that maximises their quality of life. Which sounds all a bit nebulous but basically if they are working you want them to try and carry on working, if they are retired and have hobbies you want to be trying to the keep them enjoying life to the best of their ability, in the knowledge that this is a progressive disease. (Alistair, medical specialist, neurology, Scotland)
-
Psychological wellbeingEmotional wellbeing and psychosocial coping, including the ways people related to their condition, were also recognised as salient for success, both in their own right and for facilitating condition-management and participation in social activities that could otherwise be important. For example:One of my favourite success stories was … a lady who was … very intelligent and … seemingly in control of her life, but … she put her hands in a house roof shape over her head and she said, “I feel like diabetes is always over me all the time”. And after a few weeks I said to her … “What’s your diabetes feeling like now?” and she said, “I feel like I’ve got a little badge on my lapel saying, ‘I’ve got diabetes’ but it’s just a little badge, it’s not over the whole of me”. (Kate, nurse specialist, diabetes, northern England)And, as an example of a less successful case:… a person who is really well. He’s had [Parkinson’s disease] for 11 years, he can punch a punch ball, he can ride a bike… but he’s absolutely psychologically wound up by his tremor on a daily basis, … it just embarrasses him, he can’t cope with it (Christina, medical specialist, neurology, London)
-
General health and happinessSome health professionals foregrounded broader concepts of health, happiness, well-being or quality of life, stating, for instance, that success is “sort of about health and happiness outcomes really” (Kate, nurse specialist, diabetes, northern England), that “a happy patient is a successful thing” (Isobel, general practitioner, Scotland), and that they could consider themselves successful if they had helped people to “cope better and feel better” (Angela, nurse specialist, Parkinson’s disease, Scotland).
-
Avoidance of undue treatment burdenSeveral health professionals also factored into their considerations of success the need to ensure that health care practices did not themselves undermine people’s sense of wellbeing or their broader quality of life. For example:Success has got to be much more about making the patient feel they can cope with the help that health carers give them, that it’s not an ordeal coming to the clinic, that we’re not rubbing their face in their mortality every time we discuss their condition… perhaps improving outcomes, but even not improving outcomes as long as you don’t make them feel even more miserable and oppressed by this condition that they have to live with, so that’s a success enough for me (Jeremy, medical specialist, diabetes, Scotland)
Success in terms of how well people (can) manage
-
People being able (and professionals enabling them) to deal effectively with their health conditions in their daily livesNot surprisingly, a number of examples and definitions of success related somehow to people’s abilities to get on with at least the basics of condition management (e.g. taking medication and making situational adjustments to doses). Professional facilitation of more effective self-management also featured in considerations of success. For example:I think successful’s where someone is taking ownership and getting involved in their own management of the condition. I think successful as well is, when problems arise, addressing provision of support, so having a responsiveness in the system and myself, of trying to respond to needs as they arise. (Sean, medical specialist, neurology, Scotland)People’s abilities to manage their conditions were generally seen as important, either as causally related to, or partly constitutive of, various aspects of health, wellbeing and quality of life. Broader ideas about people being able to manage or cope well with their long-term conditions also featured as important aspects of success in individual interviews, and the idea that the purpose of SSM includes enabling people to live well with their (often multiple) long-term conditions was strongly endorsed in group discussions. Examples of these overlap with examples of “Getting on with daily life” and “Psychological wellbeing” (described above).
-
People contributing to problem solving and goal setting, including in consultationsConsiderations of what people were able and enabled to do within the contexts of health care provision also featured among ideas about success.I: Can I ask for some examples of case histories from your experience to illustrate what your idea of success might look like in diabetes?P: Well I think the idea is, is when the patient actually comes up with their idea of how they can make things better rather than me dictating to them that “You need to make this change, you have to do this” … When we put that [patient’s idea] into our plan, they then come back the next time and they’re very proud of themselves because… they’ve done it themselves, so I find that a great success’. (Dorothy, nurse specialist, diabetes, London)
-
People not being ‘unduly’ or long-term dependent on professional servicesThe avoidance or movement away from forms of dependence on professional services that either patient, professional or both considered unwanted or unnecessary were also identified as indicative of success, perhaps especially by professionals who specialised in working with people with particular difficulties managing (with) their conditions.I - So going back to the idea of success, what I’m hearing you saying is that success is partly having services that are accessible but it’s partly people becoming not too reliant -P1 - Yes, about non-reliance....because we know having to live with a condition like diabetes, at different time points people are going to find that really difficult and you know, people can reach burn-out at different stages and knowing that they can access support when they might need it but not that it’s an ongoing thing that they can rely on the whole time.(Group discussion, Diabetes, London)Several participants commented on the challenges of balancing the provision of support with the encouragement of ‘self-management’, and for some, striking an appropriate balance could itself be considered a success:I would see success as getting that right balance where the patient and the family feel they have got some control but they also know that they have got support when they need it, (Alistair, medical specialist, neurology, Scotland)
Success in terms of professional-patient relationships
-
Facilitating open and effective communication from patientsGood relationships were seen as important for encouraging patients to communicate and engage with professionals in ways that would in turn facilitate the provision of effective and appropriate support (e.g. to be honest about their symptoms, actions and “what their expectations are, what they feel able to change, what they need support to change and what they feel can’t be changed” (Philip, general practitioner, northern England).
-
Facilitating open and effective communication from professionalsSome professionals noted that positive relationships enabled them to raise difficult but important issues constructively and without undermining the person or their willingness to engage with health care. For example:Hopefully I have spent time investing in some sort of relationship with the patient and actually they know that I'm looking out for them, that I’m not just somebody that nags someone because that’s my job: I’m a doctor… You have to reach some sort of level of relationship with the patient before you can start to broach things in a sensitive way that they will accept (Paul, general practitioner, Scotland)
-
Keeping health care accessibleA recognition that people’s changing life circumstances as well as their changing (and often multiple) health conditions could impact their scope to act and ability to cope meant professionals were keen to ensure people felt able to ‘come back’ to services even if they had previously been unwilling or unable to follow recommendations. Good relationships were seen as important to facilitate this.
-
Constituting supportAlthough professional-patient relationships are often talked about in ways that present their value as instrumental, several comments indicated that they can also be understood as intrinsically important components of success, not least because positive relationships can contribute more as well as less directly to people feeling valued and supported. For instance:I think success is when a family thank you… that elderly couple who I still haven’t really solved their problem but she says, “I’m so grateful that you’re there to speak to me”… Sometimes… it’s someone who understands what they’re going through and sometimes they just want to talk to relieve the tension… people are grateful that you’re there to listen… (Angela, nurse specialist, Parkinson’s disease, Scotland).It’s more about keeping people engaged with you so that if they run into difficulties then they will trust you not to force our agenda on them… so it’s more about trying to help people kind of maintain their personhood in the face of an illness rather than kind of me regarding them as a person with an illness and treating it (Matthew, medical specialist, elderly care, Scotland),
Assessing success and the quality of practice
Concerns about a focus on biomedical or other markers of health
-
Biomedical markers are generally limited as indicators of health or wellbeingAs noted above, participants generally considered blood pressure, blood glucose etc. as readily measurable but imperfect proxies for important health states or risks.
-
The relevance of biomedical and other health markers and targets variesMarkers and targets that might be broadly relevant for some people could be inappropriate for others – particularly those with more advanced disease, multiple morbidities or otherwise complex problemsIn the diabetes population… they don’t necessarily need to lose weight. Some have come in to help with their weight, but some have been losing weight because their diabetes has been poorly controlled. … So some clinical measures aren’t helpful. (Maureen, dietician, London).Some participants also stressed that assessments of success should be guided by each person’s particular health-related values and priorities.I suppose I’m not in any position to tell them whether being stiff and slow and unable to walk is worse than feeling sick all the time or whatever their perceived side effect is (Matthew, medical specialist, elderly care, Scotland)A few suggested that if a service is oriented to support people to achieve the outcomes that matter to them, those personal outcome priorities should somehow be reflected in assessments of its success:When … we talk about what might Bert [a character in a vignette] want, the point is we’ve got to completely change the accounting system so then Bert has to make up the questionnaire as to which things get [quality] points, and Bert has to say how well they were achieved (Medical specialist, diabetes group, Scotland)
-
Biomedical markers do not reliably reflect (professional support for) patients’ self-management actionsParticipants noted that even rigorous adherence to the behaviours that research evidence suggests are most effective for risk reduction will not guarantee achievement of biomedical targets or avoidance of deteriorations in health. These things are not fully under people’s control and cannot be reliably attributed to patients’, let alone health professionals’ behaviours.For example:People can make the life changes or do the right things or take the tablets at the right time, but the nature of the condition – and that can be diabetes or Parkinson’s – can mean they can deteriorate or their diabetic controls are off or the Parkinson’s gets worse despite everything we do. (Paul, general practitioner, Scotland)
-
A strong focus on standardised biomedical targets can be harmfulEspecially in relation to diabetes, some participants were quite strongly concerned about performance-related finance systems that focused on standardised biomedical targets. The targets were seen as unrealistic for many people:Somebody with an HbA1c 80 plus isn’t going to be able to get an HbA1c in the 50s in a few months (Kate, nurse specialist, diabetes, northern England).But beyond this, some participants expressed concern that an explicit emphasis on targets in clinical practice could counterproductively lead patients to become demotivated, self-critical and distressed in the face of persistent ‘failure’. Several participants were also concerned that the systematisation around standardised targets had negative implications for how health professionals felt they had to work and how the quality of their work would be judged. They lamented, for example, a culture of box ticking, shifting performance indicators and feeling “totally frustrated and suppressed and oppressed by the targets” (Jeremy, medical specialist, diabetes, Scotland).Several also expressed concern that targets could undermine efforts to work collaboratively and sensitively with each particular person and their circumstances:I never thought targets was a very good idea in the first place I think because that prevents you … I suppose it prevents to some extent treating people as individuals you know you’re just trying to get them down within their target level without necessarily taking into account their personal circumstances, their personal problems, you know other issues that may play a part. (Mark, general practitioner, northern England)
Concerns about patients’ behaviours as indicators of good quality practice
-
People’s behaviours can be constrained by various biomedical, psycho-social and material-financial factorsParticipants were acutely aware that co-morbidities and other issues not readily within patients’ or health professionals’ control could render recommended behaviours unrealistic for some particular people (or at particular times).Here we’re in the poorer area … So [it’s all] very well for me to suggest that they eat their five fruits and veggies a day when, you know, in fact, they really can’t even afford to buy a bottle of milk. So you have to take all of those things into consideration. (Dorothy, nurse specialist, diabetes, London)Diseases are sometimes complex… People are living … in a normal life, so your intervention is only a small part of what is a very big picture, and … life throws shit in the works… so in the context of people’s health and their ability to do a lot of things, then actually sometimes this kind of intervention… sometimes falls by the wayside. (Stephanie, physiotherapist, London)
-
Health professionals cannot always take blame or claim credit for (changes in) patients’ behavioursAs with biomedical markers, behavioural changes that might be regarded as a success (or failure) could not necessarily be counted as a professional success (or failure). At the failure end of the spectrum, several participants mentioned people who for various reasons did not engage enough with services to give health professionals a chance to influence them, and there was also a widespread recognition that health professionals could not and should not control how people go about their daily lives. At the success end, some participants talked about people who had long seemed unable or unwilling to work on their health problems who suddenly started to do so. They emphasised that such turn-arounds were more likely to be due to a life event such as getting a new diagnosis, meeting a new partner, or finding a new job, than anything that health professionals might be doing differently. For example:She acknowledges that this information has been available to her for years… but she’s never really listened to it before and she’s kind of not wanted to know about it… I just happened to have come across her – or she’s been referred to me – at a good time where I can be very successful with her (Kate, nurse specialist, diabetes, northern England)
Concerns about the use of patient satisfaction or happiness indicators
Concerns about the limitations of a focus on professional-patient communication and relationships
From a medical point of view, successful means that their Parkinson’s is well controlled, i.e. doesn’t really interfere with their life or lifestyle, for as long as possible… If I am being brutally honest, probably that is more to do with the type of Parkinson’s … than anything I do… There are different types of Parkinson’s in terms of the speed of progression, whether someone develops a dementia… and we don’t really have control over that… So I think from a success point of view, in terms of when I look at patients and say “Have I done a good job there?”… I would see it probably more holistically, so have I managed to establish a relationship with that person which has stood the test of time (because these people you will follow up for a number of years)? Have they found me helpful, in other words do they find the input and the support that they get from me and the service… has helped them deal with their Parkinson’s in as positive a way as possible without becoming over dependent… (Alistair, medical specialist, neurology, Scotland)
His biomedical control has always been poor and he’s never really looked after his diabetes particularly well, but we have maintained a good relationship, he has always been happy to come and see us at regular intervals. He has always apologised for the fact that he doesn’t look after himself as well, and indicated that he would do, but also indicated that he was reasonably happy living the way he was living. But unfortunately in recent years, the fact that his diabetes has been poorly controlled has really caught up with him and he has now got all sorts of problems. And I guess, you know, on one level I feel that is a failure… on my part and the team’s part, but it is also a failure on the patient’s part as well. (Philip, general practitioner, northern England).