Skip to 0 minutes and 13 secondsSo how many participants did you have, and what kind of initiatives did you use? We had over 150 patients. And we had over 90 family caregivers. And the initiatives concerned hospitals, or hospitals which connected to home care services. Did you find most of the initiatives were cancer-based? Or did you manage to get COPD and heart failure? We intended to also include patients with COPD and heart failure, but in practice, we found mainly patients with cancer and also some initiatives who focused on patients with COPD and heart failure. But the majority was cancer.

Skip to 1 minute and 0 secondsWhat were your main findings from the study? The main findings were that patients found it very important to have a feeling of security. And this security could be achieved in several ways. And therefore, we focused on three themes which were used to achieve security, and address a relational continuity, informational continuity, and management continuity. Could you explain what you mean by relational continuity? Relational continuity is about relationships that people make with professionals. And respondents found it's very important to be able to build relationships with professionals. When we asked questions about what are your experiences with a professional caregiver?

Skip to 1 minute and 57 secondsMany patients and family caregivers appreciated it when they were able to see the same professionals each time, because then they were able to know the professionals. The professionals knew them. And they also knew what their preferences and wishes of the patients and family caregivers were. But sometimes, in practice, it was not possible to have the same professionals each time. And our data suggests that also when professionals provide person-centered care, and that this care in which professionals are interested in the person in front of them. They take time to learn the patient. They can also talk about non-medical things. That is person care. And patients and family caregivers also appreciated it a lot when professionals provided this kind of care.

Skip to 2 minutes and 53 secondsAnd then they were able to establish a relationship with them. So would you say a relationship could be established quite quickly if someone was skilled rather than just because it was the same person over time? Yeah, I think so, because there were also patients, for example, who had experiences with palliative care specialists. And one patient, for example, in the Netherlands, that patient appreciated it a lot when that professional took a lot of time, was very person-centered. And this was the first time she had experienced this. And she said then I was able to establish a relationship. And when you say it's the first time she'd experience it, do you think it was because it was a palliative care initiative?

Skip to 3 minutes and 44 secondsI think so, because there were many patients who they did not expressly say that. But they had very good experiences with palliative care staff. And when they talked about other professionals, there were also many examples of professionals who did not provide this kind of care. And of course, non-palliative care specialists also sometimes provided person-centered care, but it was striking that often the past experiences were about palliative care specialists, and of course, some GPs. Because these professionals are also often very close to the patients. So what would you say the key messages were about continuity of care in the relational aspect? Now, what I think is that order, structure can provide relational continuity by providing the same professionals each time.

Skip to 4 minutes and 42 secondsBecause that is the first thing patients and family caregivers want. But otherwise, individual professionals can also provide relational continuity. So what about informational continuity? That was more between professionals and patients, was it? Informational continuity, it was both. Because in the theory, informational continuity is often about information transfer between professionals. But in our study, we also saw that many patients found information from the professional towards themselves, was very important. Because they often have a lot of questions about how long am I going to live? What kind of disease do I have? What will happen in the future? And this gave them a lot of insecurity and uncertainty. And therefore, they had a high need of information from professionals.

Skip to 5 minutes and 44 secondsSo information was often more than just when your next appointment is. It fell-- what were my blood results? It was more about really what's happening to me and what might the future hold. Yeah. It's also-- it starts with also just simple things as when is my appointment. Because these things were also important to the patient, and test results, and explanations about scans, for example. Because some professionals did not provide this to patients. But it's also about how can I understand my disease and what is possible in the future? And it did also include support in decision making. What is the best to do in the future?

Skip to 6 minutes and 32 secondsAnd did you find the language health care professionals used was good, or the right level? No. In general, the results were very mixed. But in England and in Belgium, but also in Hungary, we saw that some patients and family caregivers had difficulties with the language that was used. And then some patients had the idea that professionals didn't want to give the information, because they kept on talking in technical language. And then actually, you can give information, but then the message is not reached. And were there any differences between general or regular services in palliative care professionals?

Skip to 7 minutes and 21 secondsYes, I think in Hungary, or in-- yeah, in Hungary, in the Netherlands, and Germany, patients gave examples of palliative care specialists who provided information very well. And they did it actually together with the patients to-- they depended their information provision on what their patients and family caregivers wanted. So I think that is most important, that information is tailored to the needs of the individual patient before-- in front of the professional. And they also talked about information continuity from professional to professional. Could you tell me something about that? Yes. That is that what I just said is about information transfer between professionals. And patients and family caregivers found it's very important that this happened.

Skip to 8 minutes and 14 secondsAnd in many cases they could not describe how professionals transferred information. But when we followed up in the interview, it appeared that in practice, patients and family caregivers did experience whether information was transferred or not. Because sometimes they were in a consultation with a professional. And then it appeared that this professional already had information about them which they had discussed with another professional. And what we also saw in our interview is that it seemed that there were little networks between professionals who knew each other and who transferred information very well. And then this gave the idea to patients and family caregivers that the care was well arranged, that there was a kind of group.

Skip to 9 minutes and 15 secondsAnd beyond those networks, there were many gaps in information transfer. Did you have any particular good examples where patients come into the information transfer-- was particularly well done? Yes, there were. For example, a patient which-- this patient had experience with several GPs. And she had seen a lot of GPs. And she didn't have good experience with it. But then she had one GP, and she experienced that this GP had updated himself very good with information about her. So this gave the idea to her that this professional did not only transfer the information very well, but he also was very interested in the patient. And also, another example about a little network is that there was a palliative care team.

Skip to 10 minutes and 21 secondsAnd this team had linked with GPs as well, but also with the oncologist. And this patient also experienced that information was transferred between those professionals. So sometimes the patient came in the hospital, and then the professional said, oh, yes. I already know that. And how is it going now? So this gave the idea to the patient and family caregivers that professionals felt very as responsible to them. Because in one of the initiatives we visited in [INAUDIBLE], the coordinator was both in the community and had meetings in the hospital, which meant very smooth transfer of information. Yeah, that's true. And it is very important to have such linking pins between the hospital, for example, and home care.

Skip to 11 minutes and 21 secondsAnd patients also experience that the information is going around. And I think sometimes it's also good if the professionals let the patient or their family caregiver know that they transfer information. Because sometimes that also happens. And then they are very relaxed. And they feel at ease knowing that professionals are caring about them. And also, one example from the UK, and this patient also experienced the difference between in the past and now, that initiative had an ICT system, which was accessible throughout the network. And this patient said, now I don't need to bring the letters to everywhere, because the information is already spread. So I think when information transfer doesn't go appropriately, the patients feel responsible to transfer information themselves.

Skip to 12 minutes and 28 secondsAnd that puts an extra burden on them. But in this case, this burden was taken away by the ICT system. You also spoke about management continuity. What did you mean by that? The management continuity is actually the idea that patients have, and family caregivers, of course, that the care services are connected and coherent, that it is one whole. And what we saw concerning this theme is that at the end, the aim of care services is that the needs of patients are met. And when we asked, are all your needs addressed? Or is there still something missing? Then many patients and family caregivers said, yes. All needs are being addressed.

Skip to 13 minutes and 26 secondsBut if I have a new need or something changes, I know where to go. I know who to call. And I think this is the core of the management, that if something happens, they know where to go. And another point of this is coordination, because many respondents also had examples of care coordination. And that's occurred in four of the five countries we examined. And this coordination means to some patients, for example, in Germany, that transmissions from the hospital to home went very smoothly, that there was a case manager who linked all professionals together, that some professionals made appointments for patients so that they didn't need to do it themselves, and also that some professionals were called in by another professional.

Skip to 14 minutes and 27 secondsSo by doing this, patients had a feeling that their care was connected, and that professionals were available if they would have needs. So the key thing for patients is to have someone they know they can go to, being the main link for them for services. Yeah, and I think, actually, patients and family caregivers didn't have one single person who did it. It's just if it's one person, or that they have, for example, two numbers which they can call, then it's OK. So it doesn't matter who it is, I think. And I think at the beginning you talked a bit about patients feeling uncertain. And so in this situation, they might feel uncertain on who to call, where to go.

Skip to 15 minutes and 16 secondsAnd what did you find about uncertainty? Well, actually, uncertainty was a big theme throughout the whole study, because we started our interviews with problems and needs, and then we continued with experience with professionals. But in the problems and needs, when we were discussing that, many patients and family caregivers we're uncertain. So they were looking for stability. And professionals could provide this stability. But if there were gaps in their care, for example, they didn't know who to call, or they were not sure if information was transferred appropriately, or if they didn't know who was coming to their house. Because many professionals were involved. Then it could provide feelings of uncertainty.

Skip to 16 minutes and 13 secondsBut this could be taken away when the care services run smoothly. So overall, what would your concluding thoughts be? Now, I think that in general, patients were very satisfied, and especially when they were lucky to receive the high quality palliative care from a little network of professionals, then they were very satisfied. But beyond those little networks, there were many gaps in care. So I think good examples need to be spread to all the people who are in need of palliative care. And I think it's not only a result of working together, but also individual professionals can also made the difference.

Continuity of care

In the following online conversation, Marlieke den Herden-van der Eerden talks to Nancy about the importance of continuity of care within the InSuP-C project findings.

Marlieke introduces three types of continuity.

What are these, and why are they important for palliative care patients and their family carers?

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This video is from the free online course:

Palliative Care: Making it Work

Lancaster University