Table 3 Quotations about the theme “Social dignity inventory”

Social support

“They should not feel that they are left out, absolutely not. They should not be hanging in the air. There should be someone that they can turn to…a phone number or something, so both the relatives and the patient know [who to turn to]” (Nurse)

“Those who have relatives and friends, they are lucky. They have someone who can speak for them, when they cannot do it themselves” (SO)

“You need to find those who need this extra support so you do not give the same support to everyone” (SO)

Private boundaries

“If you are at a hospital or residential home, then the room or apartment is the patient’s. You are the guest. You knock on the door before you enter” (Nurse)

“And if a healthcare professional happens to be here when I get a phone call … then I might say, ‘Can you call me later?’ That is a way to protect your private life” (Patient)

“It can be difficult at a hospital because it is the healthcare professionals’ territory. They stomp into the room e.g., to fill up the clean laundry. They do not think that this is a private space” (SO)

Care tenor

“I met a patient today who told me that the home care service was in too much of a hurry. He was in pain and they did not listen. Then you need to have a meeting and discuss this. That is the way you have to try to handle it. If you can do something about it, you must try” (Nurse)

“It is important to have respect, that you talk to the person involved and not just go in different directions” (SO)

Burden to others

“To make them talk to each other [patient and relative]. To face the feelings and tell each other how they feel. Because it might not be that way [that the patient is a burden] and then the relative can convince the patient that that is not the case, it is just the patient who feels that way” (Nurse)

Aftermath concerns

“And sometimes the patient has a wife who has dementia or he knows that she will not be able to take care of herself. Who will take care of her? Then you need to step in and inform that we will do that, there is help and we will take care of it so that the patient can be confident in that” (Nurse)

“What worries me is how my wife will have it afterwards, if we should have sold the house earlier and gotten an apartment instead. But she thinks it is hard to imagine herself living in an apartment” (Patient)