Table 8 Quotes on subjective norms, social support and patient’s role in the decision-making process

Quote 1 (patient)

“She [informal caregiver] knows me. She knows her mother is not a pushover. She knows that I have something to say”.

Quote 2 (informal caregiver)

“If I see that the cardiologist is right about something, that it’s better for her [patient], I always try to make her see that and steer her into taking the cardiologist’s advice. The idea is to have her believe that she made the decision herself. Because only if she believes she did will she feel good about it. So I play along with her so that she can stand behind the decision 100 %. I believe that’s the best thing you can do.”

Quote 3 (patient)

“In my case my wife [informal caregiver] always says: ‘We must let the specialist decide’ simply because I should already be dead. So the hospital told us to call at once if something is wrong.”

Quote 4 (home care nurse)

“Once there was a lady with severe knee problems but her bedroom was on the first floor. She could barely walk up the stairs. Her toilet was downstairs and she used it at least three times a night. So I said, ‘Why don’t you move the bed to the living room and sleep downstairs?’ She didn’t want to hear a thing about that idea and refused. So I phoned her daughter [informal caregiver] and explained the situation. She visited her mother that evening and talked to her. The next day the bed was put in the living room.”

Quote 5 (patient)

“My mind still works. I can make my own decisions. I’m always fighting for that. My sister [informal caregiver] thinks that I’m no longer capable of doing things for myself and tries to decide for me. But I’m not an idiot. Just because I’m old doesn’t mean I’m an idiot.”

Quote 6 (patient)

“If something is wrong with me, but I don’t want to involve the general practitioner, she [informal caregiver] picks up the phone and calls the general practitioner straight away. The home care nurses always tell me to call the general practitioner. But I never do. So they call behind my back. They’re worried about me.”

Quote 7 (patient)

“I’m old, but so are my children. They’re all grandmothers and have their own families. So I cannot rely on them. [...].I don’t have many friends. Most of them are already dead. And most of my family were murdered in the Second World War. And my husband and his family are also dead. […] When I moved here 20 years ago everybody was my age. Now they’re all dead or have moved away to their children or a different city. I’m the oldest person in this building. Everybody works so I am all alone here in daytime. I can ask my downstairs neighbour for help if needed, but he is not always home. So even though I have a roof over my head, if is very lonely.”

Quote 8 (patient)

“I’m very grateful for the support of my three sweet daughters. When I hear my neighbour’s stories about how his children treat him, I feel very thankful for their support. They help me with grocery shopping or go with me to visit the general practitioner. And they also keep me company, otherwise you’d be so lonely. I can’t leave my house without them.”

Quote 9 (patient)

“Some people find it easy to ask for help. I’m not really like that. My neighbour has a son and sometimes he helps me. The other day when it was cold and the roads were slippery, he put salt on the pavement in front of my house. My daughters [one of whom is the informal caregiver] live pretty far away, so I try to ask them for help as little as possible. I always go to my neighbour for help. He has my key in case anything is wrong.”

Quote 10 (patient)

“I like it when my children visit me, but I’m also so glad when they leave. I have six children and the boys don’t bother me. But when the girls come, they check the expiration dates of every product in my refrigerator. And they check if my clothes are put away neatly. They’re like the police. Yes, people do support me, but sometimes it’s a bit too much. One daughter acts like the Mother Superior of a convent. Everything goes through her. If something is wrong with me, they all know immediately.” (70).

Quote 11 (patient)

“I’m happy they [children] visit me, but they don’t need to come more often. Once a week is fine. I’m grateful for their support, but sometimes they interfere way too much. They always want to come with me to the general practitioner and always ask ‘Have you done this or that?’ They shouldn’t be digging into my private life.”

Quote 12 (patient)

“I always make all my own decisions. Sometimes the children ask about my health. I listen to them, as long as their opinion does not conflict with my own. Because I do have my own opinion.”

Quote 13 (informal caregiver)

“I think it’s most important that he [patient] makes the decisions. Put simply, if I do something against his will, he will definitely let me know. If he doesn’t want something, it’s not going to happen. No matter how I feel about it. And sometimes I think: I don’t agree. But this is what you want, so be it.”

Quote 14 (patient)

“I always discuss everything with my two children. And if there’s something serious, my daughter always says, ‘Mom, I’ll call the general practitioner for you’.”

Quote 15 (informal caregiver)

“She [patient] wants to be involved in decision-making, but I have to help her understand what the oncologist is saying. She can’t hear very well and the oncologist doesn’t always consider that. So I write things down and when we get home and she is all relaxed again, I explain it all again in simple terms. I always accompany her and write a short report which she can read afterwards.”

Quote 16 (patient)

“If the general practitioner tells me ‘you should do this or that’, I always listen. I didn’t listen once and he got really mad. I had severe palpitations and he told me to go to hospital. But I went home first before going there. And he was really mad. So now I trust my general practitioner 100%.”

Quote 17 (informal caregiver)

“I usually make all the decisions, together with my wife [patient]. We decide what is best for her. You can’t discuss things with her because she doesn’t understand what is best for her anymore. She usually finds everything okay and never gets mad. She might say that she wants to eat something else, but that’s about it.”