Table 5 Commonalities and differences in breast cancer patients’ follow-up experiences
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 |