Table 6 Social, Sexuality and Spiritual needs; categories identified and related quotes from the experts’ perception of the supportive care needs of women with advanced breast cancer

Social needs

Acceptance

Social inclusion

For some [it] is good, but others it’s a total neglect; they don’t accept them. The person is emotionally weak, so if those around her reject her, it even worsens the situation and it speeds up the death process. (Expert 01)

Basically, what they want is social contact and people accepting them as they are. (Expert 05)

1

Openly discuss condition

So, when it comes to families and friends knowing about diagnosis [that] is a no-go area. (Expert 04)

When you have a disease, which is not curable traditionally they think you’ve contracted that because of something bad that you've done and for that matter people don’t want to associate with you. (Expert 09)

2

Community support

And our society also does not place premium on giving societal support to these people [women with breast cancer] it is not done. We don’t even have a group for them. (Expert 05)

3

Sexuality needs

Counselling on sexual relations

Spousal support

What I have noticed here over the years is that most of the women when they get breast cancer their spouses leave them. You have a few women who gets the spousal support. So, when it comes to the issue of sex, even for the woman to open herself up even after mastectomy even those who are in remission you know it is difficult. (Expert 04)

4

Sexual counselling for low libido

You know, you need to be in some mode, state of mind to be able to approach the act of sex, to be able to enjoy the act of sex. So, I’m tempted to believe that it will be reduced so much than before and this whole psychology of sex….so, this whole concept of intimacy you know a number of things cut off intimacy, [an] example is the offensive smell. (Expert 07)

When they go on the medications the chemotherapy especially it reduces their libido. So, sometimes when they are married people, they don’t feel like having sex with their partners. (Expert 13)

5

Advice on intimacy issues

[For] sexual needs don’t look at just the coital aspect of it, it also comes with touching and all those things emotional connection of which they don’t get. (Expert 05)

6

Physiological advice

Fertility advice

And when it comes to fertility issues, once the person starts chemo, if the person is young, then they worry about their fertility issues. “Will I be able to have kids after this?” But if the person is old, they don’t really worry about fertility issues because they have already given birth. But for the young patients with advanced disease, sometimes they have issues with fertility. (Expert 04)

7

Advice on menstruation/menopause issues

It really impacts on them, because for the young patients, they will kind of go into actual menopause and they experience some or most of the symptoms that go with postmenopausal women, and that is not comfortable. (Expert 09)

8

Spiritual needs

Find meaning and purpose

Seek meaning

Sometimes most of the women will tell you that they don’t understand why they have this condition, and they hope that God will heal them. So, apart from the patient coming to this centre they also seek help from the churches and then other religious bodies. (Expert 03)

9

Existential understanding

They feel that life is not even worth living with all these especially those who come with metastatic disease for which we say they cannot be cured. I mean they think it’s not worth living. (Expert 09)

Often, they begin to ask themselves “why them”. I mean, for all the religious groups they belonged to and for all that they’ve been doing, why should such things happen to them… Sometimes they ask the doctor that, why could such a thing happen to them. “I’m a Christian, I’m a Muslim, I do things right. So how do these things happen?”. (Expert 09)

10

Value life

I think for women with advanced cancer they really treasure life they really treasure every day that they live because you know for people who are up and about, who are not sick we think that it’s normal. I mean it's not a big deal. Then for somebody with an advanced breast cancer it like anything will happen in any moment. So, every single day they valued it. (Expert 07)

11

Accept reality

So, why not spend much time with God and sometimes because of that they even forgo the treatment, you can start they just abandon the treatment go to their pastors to pray, and by the time they come back, it’s even much worse than before. So, at that point that is how most of them behave. (Expert 02)

12

Find peace

Spiritual support

They feel since it’s spiritual, it has to be handled in the spiritual manner. So, instead of them coming to the hospital for medications, it becomes something else. We are competing with the pastors. We are competing with the herbalists. So, how they want to present the case to them, the spiritual side of the whole thing and how we also want to portray the medical side of the whole thing. So, now we tell them when you go home—pray. Prayer is good. We all will be praying, but when it’s time for your medication, please come. To some extent we are helping these patients to know “Oh, so it’s not all that bad” and to some extent it gives them a very big relieve [sic] because they feel they can do both. (Expert 01)

13

Spiritual guidance

For our people for the patient, women with advanced breast cancer they really need to be I mean guided spiritually (Expert 04)

14

Strengthen spiritual beliefs

Once they are diagnosed, what I have realised is that most of them, spiritually, they become stronger. They try to get closer to God because then they know its advanced disease, they may just die at any time. So, why not spend much time with God? (Expert 02)

15

Hopefulness

I always give a scenario of separate group of people. One group once they are told they have advanced disease okay then the hopes and everything is shattered. However, the other group of people are those ones who irrespective of being diagnosed of advanced disease will fight to live and you always see it that such people are always fighting and anything they are asked to do they strive to do it because they have that at the back of their mind that they want to survive. (Expert 06)

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