Table 7 Evidence to support CMOc4: the influence and impact of patient and family stories on the sustainability of a scaled, multi-component intervention

Case A-002: “So, we have five learning collaboratives. We always strive to have a patient and family story presented where we had a previous patient share their story with the audience of pictures and feedback and talking about what it felt like to be a patient. And our feedback that we received on that part of it was always very, very positive and that it was a patient story that really helped people to continue to push forward to make change and to continue with the work in terms of you know, I’ll say just continuing with our motivation to try. Because [name of clinical issue] is not a new practice in critical care and people often have said that they’re just you know, [name of clinical issue] fatigued. That they’re sick of hearing about it. They’re sick of doing the same kind of work and trying to make changes with it never happening. But one thing that we’ve heard loud and clear and continuing to hear is the patient story, really…I’ll say helped to overcome that fatigue.”

Case A-009: “So I think…and that’s been one of the most powerful things [patient and family stories]. A lot of people at the beginning said like this work is…not that they said it was dumb. But they said you know, “this is pointless. You’re never going to impact delirium. You’re not going to stop it. It’s still going to happen.” But once they saw the patient perspective…it really changed their motivation and why they wanted to do this work.”

Case A-009: “So it [patient story] created a lot of desire to make the change. Which was important because with all the different initiatives going on within AHS, people were really struggling saying you know, we have so many things going on right now, why should we work on [the intervention]? And once they heard the patient perspective or the effects and the outcomes of having delirium on their life once they were discharged from ICU, we had a lot more buy in from the staff.”

Case A-013: “Like when we first started doing delirium…we used a lot of the videos online…from the ICU delirum.org where there’s young people and the effects of their delirium on them and how it changed their long-term ability to manage was impactful actually for the staff”

Case A-003: “So one of the biggest things that I’ve seen through the learning sessions [collaboratives] and over the last two years, we did some of the family stories at the end. And that has a huge impact on the staff…because when you can identify with the families and the patients, it [intervention] seems to resonate when they can see how that’s impacted their lives.”

Case B-005: “So I think for buy-in [of the initiative] stories [from patients/families] definitely [helped with intervention buy-in]. I mean, data is one thing, but the stories are really what help people connect and, kind of have something to relate to. So I think that [stories] was one thing that when we saw that one story with that one person, we’re like “oh gosh”, you know? We [staff] really have an opportunity for improvement here and how can we do better?”

Case B-009: “So it [stories] connected people [staff] to the meaning and the purpose of their work. Where before it was very task focused. Once you understand that; once you experience that relational element of care and you have the meaning of bringing moments of happiness to people each day and you feel like you’re well supported by the team and the family members. And the family members are so pleased with the care. It’s positive feelings all, all around. So that’s, you know, part of the internal motivation [to sustain the work].”

Case B-011: “We got videos of teams talking about when a resident woke up. So you know, and we posted all of those stories on the toolkit so that people could use them and we talked about it as a strategy of using good news stories to encourage people and motivate them. So when health care aides say things like it’s actually easier to take care of people who can help then it was trying to take care of somebody who was so sedated that they couldn’t help themselves at all. That kind of became part of good news. But a lot of family stories about how I didn’t think I’d ever be able to talk to my dad again. And when he came off the anti-psychotics, we could have conversations. So that kind of thing became a really positive motivator for people continuing to do the work.“

Case B-003: “So the [case B education] package for front-line staff includes the success stories about Mrs. Jones who was on antipsychotics for a long period of time is now not. And, and while she was on anti-psychotics, you know, she was kind of drowsy and not participative or communicative. And now that we’ve been able to reduce or eliminate the use of antipsychotics, she’s up and about. So those success stories are what the front-line staff are most interested in. And families are interested in as well. Because that gives them [staff and family] the energy to continue to use behavioral approaches to managing…unwanted behaviors…instead of using pharmaceutical approaches to managing difficult behaviors.”