Person’s behaviour
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Emotions due to diagnosis
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Poor information recall caused by:
Loss of concentration, completely shaken11,15, 20
Fear18,19,21
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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”.
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Hope11,12
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Patient A: “I have always been
positive about it, that it would work out”. |
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Urge to survive11,12
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Observation field note:
“During option talks people were completely shaken, in contrast to the
decision consultations where people showed fighting
spirit”. |
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Patient’s participation role
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Patient’s preference of participation14,16,19,20
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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”.
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Impact of the disease itself13,14,16,19
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Case
manager B: “In contrast to other oncological chains, this patient group
is often really ill”. |
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Impact of treatment on the patient11,13,15,17
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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”.
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Need for time out18,19
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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
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Relationship between healthcare professional and patient
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Trustworthiness and mutual respect11,15,17,19
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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”.
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Open and honest communication11,13
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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”. |
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Values, standards and communication skills of the
physician16
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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”. |
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Information provided by healthcare professional |
Repeat and spread
information across multiple talks11,15,17,19
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Case
manager B: ”Often you have to repeat the information again; you often
mention the entire conversation again”. |
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Audio recording of information11,20
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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”.
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Impact on patient’s daily life11,13,15,17
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Patient B: “It helps when there’s information given about the impact of
the treatment in my daily life, also in the long term”. |
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Tailored made information11,15,17
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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”. |
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Discuss multiple options19,20
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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”. |
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Role of case manager11
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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”. |
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Social support |
Support11,12,17,18,20
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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
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Patient’s characteristics
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Demographic characteristics14,15,20,22,24
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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”.
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Patient’s skills for shared decision-making19
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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?”
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