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Table 5 Examples of supporting evidence from stakeholder interviews

From: Supporting shared decision making for older people with multiple health and social care needs: a realist synthesis

CMO1: Reflecting patient and carer values

 Patient capacity to access and use care

“It (refers to SDM) makes it easier to avoid situations where people either don’t understand what the medication that they’re being prescribed is for, when to take it, how to adjust it with other medication that they may be on, and so on. It can lead to...to a plan which is grounded in shared expectation.” SH06

 Interprofessional approaches to PCC

“So whether someone is seeing one clinician all of the time and over time making a number of decisions, or if they’re being seen in five different clinics over the course of whatever, the fact that that ethos of person-centeredness is embedded across that, you know, and their information shared and they build on it…” SH15

 Patient feels involved and engaged

“…when you’re offered an opportunity to discuss your own care you feel as proud as anything…” SH02a

 Patient centred approaches

“…he then saw where we were going with his treatment...he was an active participant whereas before he’d been very much, “No, I don’t want to do this, I don’t want to do that”.” SH10

 Goal setting

“I think the Year of Care Programme is another example of that, which was started in diabetes which focused on, you know, care and support planning, that’s how they framed it but essentially is about people making decisions together about what matters to them, setting their goals and then making decisions about what treatments and other things will support that.” SH15

 Adherence

“From the clinicians’ point of view, the benefits (refers to SDM) are that there’s an increased likelihood of adherence to clinical plans and to prescribed medicines. It leads to better use of resources…” SH06

 Feeling valued

“The consultant even phoned me at home and said, “This is what’s happening, this is what we need to do,” so I was fully involved when my mum, you know, lost capacity for those few days, and I felt very valued…” SH07a

 Continuity – individual and system based

“…when you’re talking about allowing them to develop the relationship, are we thinking about continuity over time or are we thinking that actually we’ve just got a system that supports person-centred care and that values that as part of any consultation.” SH15

CMO2: Systems to support SDM

 Risk

“…on Monday that I had, a patient who has quite significant dementia who’s in her 90s, and there’s a lot of sort of indecisions about where, whether she should be at home, whether she should be in a care home or supported accommodation. There are clearly, you know, now some risk issues by her remaining at home on her own, but, you know, after a lot of sort of decision and discussion, I guess, you know, the decision was that it’s best, that’s where she was best to be even though we were all expecting some degree of risk…” SH03

 Risk

“…she said, “No, I don’t want to take any tablets, thank you very much. I know the risk.” That’s fine…” SH10

 System based approaches

“…we work with clinical colleagues here who do that [send results to patients before a consultation] in diabetes a lot and that works well and it just seems to make sense doesn’t it? You don’t go along to your bank manager and have a discussion about your bank account without knowing what your balance is…” SH20

 System based approaches

“crucially, the patient is able to see the outcomes of all of those tests in advance of their care planning discussion, which means that they’re able to think about what that means for them, and a good care planning template will have on the front some free text boxes which ask questions like, “What’s most important to you to discuss in the care planning conversation?” “Have there been any changes since we last spoke that you’d like to raise?” “Do you have any questions?” and so on, which means that the conversation, alongside taking into account the person’s clinical needs, also gives an invitation, I suppose, to the person, to feed in the other aspects of their life…” SH06

CMO3: Preparing for the SDM encounter

 Family involvement

“So if you’re doing a care planning meeting with an older adult with multiple conditions that you give them a chance to have a think about it, often with their family member as well.” SH10

 Choice

“So it’s not about what people want, it’s about where there are options, understanding, so the patient and carers need to understand what the options are, you know, what the risks, the benefits, the consequences of the different options are and they need to understand what’s important to them in deciding between them.” SH20

 Asking questions

“…the provision of really high-quality information for people, we know that that makes a really significant contribution for people, increasing their confidence, potentially increasing their levels of literacy, in terms of their understanding of their condition and how it impacts on their life, but also being more confident to ask the questions that they need to from their clinicians, and to offering their own perspective…” SH06

 Asking questions

“… there was a video for patients and there was the “ask three questions”, materials that were used throughout...showing the video on, you know, in the waiting room in the GP surgery or whatever, that actually that had little or no impact on increasing the likelihood of patients asking those questions of their healthcare professional, but where it did have an impact is that it meant that the clinicians were much more likely to prompt patients around those questions.” SH15

 Medical authority

“…my parents, because they were both in their 90s when they died, they would assume somebody with, anyone medical had authority.” SH17

CMO4: SDM as part of a wider culture change

 Power differentials

“…the power differentials are one of the bigger barriers to shared decision making and so it is about recognising, it’s a fairly simple thing to say, but recognising there are two experts, that the clinician who understands the options and the risks, the benefits, the consequences and so forth and the patient who understands what’s important to them.” SH20

 Change

“…how we have always framed, you know, our shared decision making and our self-management work is that this was part of essentially a transformational change…” SH15

 Wider change

“…there is no intervention that creates culture change, whatever it is, but it’s absolutely right that it has to happen and that happens because all sorts of different things get aligned if you like but that takes time and it has all the issues that you’ve already talked about around systems, skills, attitudes, education, training, patient roles, all of those things need to be aligned…” SH20

 Changing attitudes

“Yeah, so I think some of it will be attitude changes, I think some of it will be cultural. I think some of it will come, so we are seeing shifts within new care models to, you know.” SH06

 Culture

“…really good quality, shared decision making, comes largely from the culture, and through communication and between clinical teams and people…” SH06

 Patient responsibility

“…changing attitudes and experiences of patients can be at times as much a barrier to shared decision making as the attitudes of the clinicians.” SH20

 Attitudes

“…there are some really important attitudinal underpinnings that need to be addressed before you can even do the skills training…” SH20