| Theme 1a: An individually tailored and multidisciplinary recruitment approach is most likely to be successful | “So [recruitment is] a case-by-case. You can’t just say oh wait until day two….you can’t have just a static time when you deliver. I don’t think that would work out properly.” (White Father, Focus Group, naïve to eSCCIP) “But I can’t say enough that every situation is different. People have different perspectives. And when they’re hearing stuff, it hits them different.” (African-American Father, Interview, naïve to eSCCIP) “…But if it would have come from, let’s see, somebody or one of the nurses that I had a connection with just sitting down talking to me about it. I probably—even though I’m not ready, I would have thought about it a little bit more.” (African-American Mother, Focus Group, naïve to eSCCIP)
| Biweekly attendance by research staff at psychosocial rounds to discuss recruitment Identification of nursing and physician champions to introduce intervention to families Establish partnerships with inpatient nursing, child life, and social work
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| Theme 1b: Presentation of eSCCIP to parents is of paramount importance in terms of potential participation | “So it was an easy “yes” for me. I, at the time, didn’t view it like a research thing. I viewed it like “I’m going to look at this, this is supposed to help me, and the I’m gonna be able to talk with somebody after.” And I needed that at that time.” (White Mother, Focus Group, previous eSCCIP exposure) “A good way to present it would be ‘there has been a study where it has helped other families.' You might find it beneficial. It may be able to help you through something that you’re going through.” (African-American Mother, Focus Group, previous eSCCIP exposure)
| Develop multi-format recruitment tools (e.g., video, flyer) that highlight potential psychosocial benefit of participation Identify parent “ambassadors” who can describe intervention and answer questions about participation
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| Theme 1c: Timing of recruitment is important | “…and at that point, even if I was approached, being so engulfed with everything that was going on, it probably would not have helped at all. It was just more focus on where I need to be, where I need to get him, and what has to be done to get to the next step.” (White Father, Focus Group, naïve to eSCCIP) | |
| “I think that those first—especially that first few days when you have no idea what’s going on; you’re worried about life and death and everything else. This would just be—I would not be able to kind of—really absorb that.” (White Father, Focus Group, previous eSCCIP exposure) | |
| Theme 1d: Introduce eSCCIP early and revisit recruitment often | “Even if it’s just as simple as just making it clear that there are resources when you’re ready initially, that idea of letting us know immediately or like hey, just so you know, it’s up to you when you guys—if you ever want to participate in something like this.” (White Father, Focus Group, naïve to eSCCIP) | |
| “I think it just has to come in many different forms and many different times. I think the inpatient, ideally the patient videos is a great idea…But also just every time you go to clinic, hey, a reminder. Hey, this exists for parents if you’re struggling or if you’re not struggling. Here, this still exists; or emails—I don’t know. I just feel like it has to come in a bunch of different forms.” (White Mother, Focus Group, naïve to eSCCIP) |
| Theme 1e: Offer intervention to each caregiver | “I kinda wish I would’ve pushed [my husband]—because it was presented to me that he could do it too, and it was offered multiple times. But at that point, we weren’t really communicating…That’s the one thing.” (White Mother, Focus Group, previous eSCCIP exposure) “And my situation is like that because her dad is around but he’s not—he came one time to the hospital….So, it was more like I was the one going through it. I was the one dealing with her, and then I had my mom and my sister which is my support. I will have my mom or my sister staying here. Because it affects everybody that you’re around and it seem like the immediate family, anyone that’s closer to her to have to deal with her and be around. And it affects them more. I think caregivers, whether it’s two or three, should all participate.” (African-American Mother, Focus Group, naïve to eSCCIP)
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