Experiences of UK African-Caribbean prostate cancer survivors of discharge to primary care

Abstract

Black men are three times more likely to develop prostate cancer (PCa), to do so at a younger age and to experience a more aggressive form than White men. This study aims to understand the experiences of African-Caribbean men with respect to their discharge to primary care following successful PCa treatment and the challenges associated with survivorship. Design: Eight African-Caribbean men, who had been successfully treated for PCa, were recruited through the charity BME Cancer Communities. They participated in a focus group, which took place on the premises of the charity and was audio-recorded. The recording was transcribed and the data were analysed employing thematic analysis. Results: Three overarching themes were developed: Discharge-misconceptions and uncertainties; Survivorship-challenges and ways of coping; Black men and PCa: real and potential discrimination. Participants expressed concerns regarding the lack of information and clarity about what discharge meant, the quality of follow-up care, especially the levels of specialist knowledge among GPs, and the impact of side-effects, particularly erectile dysfunction (ED). Participants linked ED with stereotypes of Black male sexuality, particularly in relation to difficulties of expressing their emotions and psychological distress. African-Caribbean men face particular challenges in dealing with the side-effects of treatment for PCa, which are linked to socially-constructed ideas of masculinity. Conclusion: There needs to be a greater focus in primary care on understanding these issues and providing individualised culturally-sensitive care. In particular, GPs should be aware of sensitivities concerning help-seeking related to culturally-mediated understandings of masculinity.

GP experience and understandings of providing follow‐up care in prostate cancer survivors in England

“…Men of these ethnic backgrounds are at a higher risk of developing prostate cancer and do so at a younger age, so they are likely to have particular needs. For example, a recent study (Margariti et al, 2019) found African Caribbean prostate cancer survivors believed that lack of knowledge among GPs about aspects of PCa that were of particular relevance to them was problematic. While our study did not seek to address the issue, it is known that gay men with PCa report low satisfaction with PCa health care (NHS, 2014), and studies have reported that particular sources of dissatisfaction include assumptions of heterosexuality, lack of interest and lack of appropriate knowledge among healthcare professionals (e.g.…”

Supportive care needs of men with prostate cancer: A systematic review update

“…“It's a little kind of, look , well you know I've cured you of the cancer so that's the big job , you know . ” ‐ Participant (Ettridge et al, 2017) I spent a bit more time with them ( hospital specialists ) and I explained more things in more depth so when I did not have the answers from GPs or I felt that I wasn't given enough information ( … ) because of the consultant's expertise who is specialised especially in erectile dysfunction , that was his speciality whereas you get a GP who looks at everything and they are not specialised in that particular area . ‐ Participant (Margariti et al, 2019)…”

“…In one study (Margariti et al, 2019), men discussed their need to conceal negative emotions from their immediate family, in order to present themselves as a role model for their children.…”

“…Participants generally felt that the amount of psychosocial and psychosexual support provided could be improved. Men expressed fears and worries surrounding their families, relationships, the damaging nature of side effects, risk of recurrence and financial problems that often went unaddressed by their HCPs and contributed to feelings of isolation (Catt et al, 2019; Dunn et al, 2017; Dunn, Ralph et al, 2020; Kelly et al, 2015; Margariti et al, 2019; Matheson et al, 2019; Nelson et al, 2019; Paterson et al, 2017; Paterson et al, 2019).…”

Evaluation of the safety and effectiveness of prostate‐specific antigen (PSA) monitoring in primary care after discharge from hospital‐based follow‐up following prostate cancer treatment

“…A greater emphasis on individual patient issues, understanding and needs after prostate cancer care is needed where aftercare is tailored to the individual patient. Patients may have different aftercare preferences according to age, education, gender and culture (Huibertse et al, 2017; Margariti et al, 2019). We need to acknowledge that for a sub‐group of men, face‐to‐face traditional follow‐up in outpatient clinics will be the best form of aftercare for them.…”