Category Subcategory Determinants references Illustrative quotes
Person’s behaviour
Emotions due to diagnosis
Poor information recall caused by: Loss of concentration, completely shaken11,15, 20 Fear18,19,21 Physician assistant: “Once you drop the word cancer, imagine that people will remember about 10% of your conversation”. Case manager A: “Fear of treatment and what is to come”.
Hope11,12 Patient A: “I have always been positive about it, that it would work out”.
Urge to survive11,12 Observation field note: “During option talks people were completely shaken, in contrast to the decision consultations where people showed fighting spirit”.
Patient’s participation role
Patient’s preference of participation14,16,19,20
Geriatrician: “To know the role preference of a patient you have to get to know the patient, you have to take the time for that”. Case manager C: “Which involvement role a patient takes has not so much to do with education, background or intelligence or whatever. It’s more, well, of course your perspectives definitely play a role in that. But also character and a bit of guts”.
Impact of the disease itself13,14,16,19 Case manager B: “In contrast to other oncological chains, this patient group is often really ill”.
Impact of treatment on the patient11,13,15,17
Patient B: “I want to know the long-term consequences on my quality of life when I make a treatment decision”. Patient C (observed): ”I am not involved in the medical decision, who am I to say something about it? They have studied for years. It is important to me that I know how things will turn out, when I can do certain things again after the operation”.
Need for time out18,19 Oncologist: “People don’t hear everything in a conversation. They don’t need to make a decision in one conversation and they need time to think”.
Physical/socio-cultural environment
Relationship between healthcare professional and patient
Trustworthiness and mutual respect11,15,17,19
Geriatrician: “In any case, it is known that there must be a relationship of trust between the doctor and the patient. It is important to test this as well, to see whether there is enough. How do you do that? That’s a good one. That is implicit, you notice it”. Patient A: ”And it has to get along well, it has to feel good”.
Open and honest communication11,13 Patient A: “When to trust a doctor? First of all honesty, directness. Don’t beat around the bush or make it more beautiful than it is. Just say it like it is, honesty”.
Values, standards and communication skills of the physician16 Geriatrician: “The attitude or communication skills of doctors often vary. More training on the job should take place here or through intervision training of competences in shared decision-making”.
Information provided by healthcare professional Repeat and spread information across multiple talks11,15,17,19 Case manager B: ”Often you have to repeat the information again; you often mention the entire conversation again”.
Audio recording of information11,20
Case manager C: “Patients come with questions, and especially when the conversation has not been recorded, people have questions about what was actually said because one has heard this and the other that”. Surgeon: “It doesn’t happen by default. Sometimes I offer it, but not always, while I certainly see added value in it”. Patient B: “I wasn’t aware of the possibility, but it could help me for information recall and sharing information with my husband”.
Impact on patient’s daily life11,13,15,17 Patient B: “It helps when there’s information given about the impact of the treatment in my daily life, also in the long term”.
Tailored made information11,15,17 Patient D (observed): “Yes I have looked on the internet, but that didn’t make me happy. There is also so much and it gets so complicated. I stopped doing that”.
Discuss multiple options19,20 Case manager A: ”I think by providing information about what is and what is not possible so that they know what they can choose and what not to choose”.
Role of case manager11 Case manager C: ”A case manager provides a bit of clarification and subtitles: what has all been said and what is the impact of the treatment proposal and to what extent does this match your wishes and expectations”.
Social support Support11,12,17,18,20 Case manager A: “The social support system is extremely important regarding how you get through a certain treatment. It is impressive what comes your way. And then you need someone”.
Person
Patient’s characteristics
Demographic characteristics14,15,20,22,24
General practitioner: ”If someone has a low socioeconomic status, there is not always shared decision-making. Then you are more likely to take a paternalistic role”. Geriatrician: “Non-Western migrants often have family decisions. It is customary for the eldest son to consult with others. You notice that it is very common that people listen to or decide according to this person”.
Patient’s skills for shared decision-making19
Patient A: ”If I make my decision, I will be completely behind it. I support that. If you look back at your treatment process, you have had to make various decisions. Have they been decisions that you still support? Yes, I still support that. And the fact that you influenced it? Happy that you are being listened to and that you can possibly participate in decisions? That is positive. On the other hand, I think: clinician, you should have told me what you think ”. Case manager C: “Sometimes people find it very scary or difficult to make such a choice and then you often see I call it ping pong. The doctor wants or tries to make as little of the decision as possible and to place the decision with the patient. Some patients cannot make that decision at all and then they go back again: what would you do doctor?”