Table 3 Informational need; categories identified and related quotes from the experts’ perception of the supportive care needs of women with advanced breast cancer

Informational needs

Understand the disease process

What cancer means

I think the patient must know the kind of diagnosis she has. So, the name of the disease in the local language and the medical language should be given to the patient, and in as much [detail] as possible… (Expert 08)

1

Cause/risk factors

You know cancer in our parts of the world we have different views about what it really means. So, they need to know what it is about because there's one question that most people normally ask. How did I acquire it? Is there something I can do? Or something I did wrong. So, there are a lot of questions that we need to help these people [women] to find answers to. (Expert 01)

2

Dispel misconceptions

People [women] still have that mentality that they are spiritual [the cancer is caused by spiritual forces] especially when there's no history in the family. (Expert 01)

3

Being proactive about information seeking

Most of the time what I have observed is that they have that problem talking to doctors about the disease condition. Some of them tend to see doctors as super humans and so they think that the doctor is all knowing, and the doctor has rights over their disease condition or has rights over them. And so, whatever the doctor says they just take it without probing, without asking further questions. But when they come out from the doctor’s consulting room that is when you the nurse, they come to you and they try to engage you. (Expert 06)

4

Understand service/treatment issues/care processes

Treatment options

You need to let the patient know what is available in terms of treatment. No matter the stage…something that can be done for the patient. So, I think in terms of information, that should be made available to the patient. (Expert 08)

5

Prognosis/outcomes

And then apart from the diagnosis the patient deserves to know the prognosis. (Expert 08)

6

Adherence to treatment

They must always be punctual at the hospital, take their medications well [as prescribed]. (Expert 12)

7

Side effects/complications

How to cope with the treatment whether it’s side effects of the chemotherapy, radiotherapy and all that. And how to cope with I mean any other thing that will come or any other complication they might develop after the treatment, lymphedema and all those things (Expert 02)

8

Cost of treatment

We also bring them to appreciate gradually the cost that maybe involved in the investigations and the treatments that they are going to encounter. (Expert 07)

9

Existing support services

The existing services around the communities one thing is most patients may not be aware there is a service that can help them with their situation that they find themselves. Most of them are not aware and as a matter of fact they are not using it [accessing the services]. (Expert 01)

10

Ongoing information

As for the information they need it all the time. Each time they visit you still need to hammer on some of the points that maybe the patient has gone through. (Expert 13)

11

Sources of information

Oral information

“It has to be verbal…verbal, I think sinks [in] more, especially in our setting where most of our patients are not educated.” (Expert 08)

12

Written information

It could be in leaflet form. (Expert 03)

13

Audio visual (videos)

Other source like…something in audio visual about the conditions for them (Expert 03)

14

Internet

Those who are enlighten can also go online to read about it. (Expert 03)

15

Doctors/nurses

Anybody who sees the patient [can provide information to the women] provided the person is well resourced to give that information. (Expert 02)

16

Allied health professionals

Here [at recruitment site] the counsellor and the psychologist talk to them. (Expert 10)

17

Survivors of breast cancer

I think it [information] should be from survivors. (Expert 11)

18