Table 3.

Select Quotes from Caregivers

Theme	Caregiver	Quote
Cost	1	“I mean for the financial parts it’s more about how she feels. I spent all my savings on the first treatment”
Cost	11	“I apply for no pay leave and come late … Then I quit my job [laughs]. Then it becomes a concern you know … more for the money part.”
Cost	10	“I feel significantly burdened by the cost because the cost is significant. It is not something that is minor.”
Side-effects	4	“She couldn’t even smell people cooking … In a way, it’s spoiling her chance of recovery, it really takes away the quality-of-life from the patient. Technically it worsens the situation.”
Patient autonomy	9	“It really depends on the situation of what the patient wants, and if the patient wants a different kind of outcome or different design of the treatment, then we are more than happy to discuss with the doctors.”
Withholding from patient	2	“For example, my biggest concern I don’t tell him, (…) Yes. That was, that could be a problem in the long run.”
Withholding from patient	10	“My frustration is that she may not make the same rational decisions that we would make when given the same choices.”
Withholding from physician	6	“We don’t discuss financial stuff with the doctor, but yeah we just trust that the doctors will do their job. We believe they will do their job and give her the best treatment possible.”
Doctor recommendation	11	“Definitely you know for us the doctor communicates with us very well. When the doctor said, you are performing well, she is happy. But if I say: ‘you’re recovering well’, I’m not the doctor, she won’t trust me. ‘I don’t believe you. You are not the doctor.”
Where treatment is	4	“ … home environment where he might be still free to roam around in the house, it’s a big concern for us because if we pick the home-based, my mum will be like, to what extent of cleanliness are we talking about for cleanliness.”