Table 3 Subcategories and representative citations referring to caregivers’ role (CR) in a PEPA-scenario

CR1) Caregivers’ tasks and responsibilities

“Well, I think the advantage for me would definitely be that I could just authorize another person. Because I often had the situation that I needed some documents and then I said ‘Yes, Mom, drive home quickly, the folder is there and there, third page right, yes.’ And so, I can simply authorize her and she could then look in up. That would be an important advantage for me.” (FEA_P_2)

“That’s why it’s so important - that there are external access possibilities. That you don’t have access alone and if you are lying in bed then you are cut off from the world. […] It must not be like this.” (FEA_P_12)

CR2) Realization of caregivers’ access

“[…] We would probably do that with one access, because we keep no secrets from each other and would simply use it together. If he [the patient] couldn’t, I’d probably have to manage that, maybe he’d take a look sometimes, but usually it’s something about what he says, that he wants to have as little as possible to do with it personally […] the good days should be good days - and why waste time on something like that?!” (PRE_C_4)

“Yes, I granted my son access, I gave him my login data.” (FEA_P_10)

“Let’s say, a patient is busy getting well. That doesn’t leave much time or patience for such a portal. I’m going to say that as a husband, I took on the role of managing all the documents by and large.” (PRE_C_22)

CR3) Caregivers as transmitters for emergency data

“It might be necessary, yes?! If you are in a hospital and you can’t do it or something, then it would probably be important that someone does it. [...] You should release that separately, I think. Not everything but again a selection. [...] The emergency dataset might be enough, I don’t know.” (PRE_P _15)

CR4) Comparison with patient decree/ health care proxy

“[…] if I make a living will now, I have to use someone who ultimately makes the decision. […] I’m not entering someone I don’t have full confidence in or with whom I haven’t discussed what would happen if…” (PRE_C_17)