Background
Breast cancer survival
Ethnic group | England & Wales (%) |
---|---|
White (White British) | 86.0 (80.5) |
Mixed/Multiple Ethnic Groups | 2.2 |
Asian/Asian British | 7.5 |
Black/African/Caribbean/Black British | 3.3 |
Other | 1.0 |
Experience of breast cancer post-treatment
Changing models of survivorship care
Aims of the study
Methods
Research design
Recruitment and sample
Procedure
What information and support services have you used to address your needs since you finished breast cancer treatment, including those from NHS and other statutory service providers, and from other (non-statutory) providers? Who provided, when, and where? What do you think about the support that the hospital provided you about life after breast cancer treatment? What other support would you like to be available to patients following treatment to help them adjust/ cope with the physical and emotional impact? Who should deliver it, how and when? |
Analysis
Results
Ethnic Group |
N
| |
White British | 23 | |
Indian | 7 | |
Pakistani | 9 | |
Asian Other | 1 | |
Sub-total
| 17 | |
Black Caribbean | 14 | |
Black African | 7 | |
Sub-total
| 21 | |
Other/Mixed ethnicity | 5 | |
Age |
N
| |
30–50 | 27 | |
51–70 | 29 | |
≥71 | 10 | |
Recruitment location |
N
| |
North of England | 26 | |
Inner London | 21 | |
South-East | 19 | |
Socio-economic position (SEP) |
N
| |
NS-SEC 1 & 2 - Managerial, administrative and professional occupations - Intermediate occupations | 35 | |
NS-SEC 3, 4, 5 - Small employers and own account workers - Lower supervisory and technical occupations - Semi-routine and routine occupations | 22 | |
Never worked/long-term unemployed/other | 9 |
Months since end of active treatment |
N
|
0–6 | 50 |
6–12 | 16 |
Number of follow-up appointments |
N
|
0 | 8 |
≥1 | 48 |
Unknown | 10 |
Theme | Commonalities across groups | Differences by ethnicity | Differences by SEP | Differences by age |
---|---|---|---|---|
Emotional response on transition to follow-up | Abrupt end to treatment and appointments - feel abandoned, out of hospital ‘safety net’ Unprepared and uncertain about what to expect at the end of treatment and what follow-up care would entail | White British women shared the most about their feelings Black African women born overseas relieved frequency of appointments was reducing; did not feel abandoned | No discernible differences identified | No discernible differences identified |
Challenges communicating with HCPs at follow-up | Lack of contact with Breast Care Nurse (BCN) - Surprised/disappointed BCNs not at follow-up appointments and/or do no make contact with women but: - Reluctance to contact BCNs Appointments focus on the physical; no opportunity to ‘talk’ particularly about emotional concerns Appointments rushed, impersonal so were not reassuring. Unable/uncomfortable asking questions, leading to unanswered questions Lack of continuity of care; unknown HCPs at follow-up appointments | White British women shared most about communication challenges; Black African women shared least Women born overseas reported language issues and needing someone with them at follow-up appointments; struggled to ask questions White British women reported HCPs manner changed – from personable and caring to rushed and unsympathetic Black African women did not mind seeing different HCPs at follow-up appointments | Indian & Pakistani women born overseas and in a lower SEP needed to be accompanied to appointments | Focusing on the physical was a positive for women aged 71+ as they were reassured cancer had gone |
Challenges finding and accessing information and support services to address unmet needs | Reliance on written information post-treatment Women wanted someone to talk to: - expected BCN would fill this role - wanted to talk to other women who had breast cancer Would like telephone calls with BCN to discuss how they are feeling Ad-hoc signposting to information and support services - linked to availability of services - uptake of services more likely when signposted by trusted BCN | Language – women born overseas were given written information they could not read. Limited availability of culturally-specific information for Black African, Black Caribbean and South Asian women Black Caribbean and South Asian women wanted to talk to a BCN to get information; preferring verbal communication Women from minority ethnic groups wanted signposting to sources of information that considered culture and religion. Limited uptake of services by Black Caribbean and Black African women Black African women said peer support should be available but would not use (scared to/other commitments) | Indian & Pakistani women born abroad and in a lower SEP relied on family members to read information for them | Women under 50 reported a lack of signposting to information and support |
Emotional response on transition to follow-up
All of a sudden, that's it, full stop. And it's like, you know, it's like being stranded in the middle of nowhere (UK-born Pakistani, 30–50 years. 6–12 months post-treatment).
There is information about things like side effects and stuff like that but…you’d hear about the fatigue and you think “okay, as soon as you finish chemo, fatigue will go” but it didn’t, and it would have been helpful to be…told a bit more that, you know, some of the side effects are much…longer than you anticipate (UK-born Mixed ethnicity, 30–50 years, 0–6 months post-treatment).There should be more things about preparing people for the ending and in terms of what to expect, what, I’m afraid not just what to expect… How do you adjust? (UK-born Mixed ethnicity, 30–50 years. 6–12 months post-treatment).
Challenges communicating with HCPs at follow-up
Disappointment with lack of breast care nurse (BCN) contact
It’s just like you’re left, where are you going to go? I know there are the nurses I can go and talk to but still you can’t, you feel like you’re wasting your time if you’re ask every little thing and probably you’re wasting their time (Born abroad Pakistani, 30–50 years. 0–6 months post-treatment).I think when I had follow-up appointment she [BCN] should have been there but she wasn’t… I didn’t get to talk to her at all. I didn’t even see her on that day, she wasn’t there (Born abroad Indian, 51–70 years, 0–6 months post-treatment).‘[BCNs have been] really good… Even now she’ll ring me once a week to see how I’m doing and everything’ (UK-born Pakistani, 30–50 years, 0–6 months post-treatment).
Communication barriers
I don’t understand if I don’t have one of my children next to me. I keep asking them. Always there has to be someone with me. She [daughter] took over because she kept asking the doctor because sometimes I can’t explain what I want to say (Born abroad Other ethnicity, 51–70 years. 0–6 months post-treatment).
Focusing on the physical - little opportunity to discuss emotional concerns
When you come to an appointment, they just deal with the breasts, they don’t ask me… They’re just dealing with the body, yes. But we need more people to deal with the person (UK-born Black Caribbean, 30–50 years. 0–6 months post-treatment).
They said every time, very good, your condition, so I am happy and come home (Born abroad South Asian (Other), 51–70 years, 0–6 months post-treatment).
Hurried nature of appointments
It was like two minutes and I’m out (Born abroad Black Caribbean, 30–50 years. 6–12 months post-treatment).
You think, ‘are they feeling it properly?’ And then sometimes you do come out of there and think ‘oh, am I just another number or another one that they’ve seen?’ (White British, 30–50 years. 6–12 months post-treatment).
Previous appointments have been more friendly… They’ve got to put you at ease more whereas afterwards when you’re well again perhaps they feel that doesn’t matter so much (White British, 71+, 0–6 months post-treatment).
Lack of continuity of HCPs
You don’t necessarily see the same person do you? Which is a shame really. I know doctors say, ‘it doesn’t matter’ you know, ‘we’re generic,’ you know, ‘we’ve got all the information on the computer,’ but I think it’s not the same for a patient, a patient likes to see the same [doctor] (White British, 71+ years. 0–6 months post-treatment).
When somebody strange comes in, I don’t know that person and that person doesn’t know me (Born abroad Black Caribbean, 30–50 years. 6–12 months post-treatment).
Challenges finding and accessing information and support services to address unmet needs
They need to have somebody within the clinic that can go along and can go and speak to people randomly. Asking them ‘how they feel, this is what is available, have they gone to this”. Yes it’s in the [information] book, but not a lot of people look in the book. Because you look in the book and you’re overwhelmed by what and how much is in the book (UK-born Black Caribbean, 51–70 years. 0–6 months post-treatment).
Support wasn’t there just purely for Muslim women, you know? There’s a lot of information out there for every other group, but for me personally, I couldn’t find anything. (UK-born Pakistani, 30–50 years. 0–6 months post-treatment)I’ve had no information about how African Caribbean women are affected by cancer. During my research, I found out that the likelihood of Afro-Caribbean women dying of cancer is higher than other, some other races and so on. I’m not sure if that is their role [BCN], but I have had to try and find out. (Born abroad Black Caribbean, 30–50 years. 0–6 months post-treatment)
What I feel is missing is not having anyone. For example, I was assigned a breast care nurse and I don’t, that person hasn’t called to find out how I’m doing or how I’m getting on. We have not spoken, she has not called me to find out how am I coping…. I have not had the care that that person should have given (Born abroad Black Caribbean, 30–50 years. 0–6 months post-treatment).
It would have been helpful if the hospital did give you like a list of local help, like, help service groups but there wasn’t any, there wasn’t that information (UK-born Indian, 30–50 years. 0–6 months post-treatment).
They say “we are available for you”. It’s not that you just finished your treatment and you’re off the list (Born abroad Pakistani, 30–50 years. 0–6 months post-treatment).
I’m too scared to do it [go to a support group]. I don’t mind, sometimes I think, well, they don’t know me, maybe I should go to where they don’t know me, but then what happens if you get there and you know somebody there? (Born abroad Black African, 51–70 years. 0–6 months post-treatment).