Adjustment strategies amongst black African and black Caribbean men following treatment for prostate cancer: Findings from the Life After Prostate Cancer Diagnosis (LAPCD) study

Abstract

Objective: To explore adjustment strategies adopted by Black African (BA) and Black Caribbean (BC) men in the UK as a response to the impact of PCa diagnosis and treatment effects. Methods: Men were recruited through the UK-wide 'Life After Prostate Cancer Diagnosis' (LAPCD) survey. Telephone interviews were conducted with men (n=14) with BA and BC backgrounds between 18-42 months post-diagnosis. Data were analysed using a Framework approach. Results: Most men (n=12) were born outside the UK, were married (n=9) and employed (n=9). Median age was 66 years (range: 55-85). Six overarching themes emerged: a strong reliance upon faith beliefs; maintaining a 'positive' front; work as distraction; non-disclosure of diagnosis even amongst family members, influenced by stigma and masculinity concerns; active awareness-raising amongst a minority, and; support-seeking from close community. A few men emphasised a need to 'pitch' awareness-raising messages appropriately. Potential links existed between faith beliefs, presenting a positive front, community support-seeking and local awareness-raising. Conclusion: The provision of patient-centred care requires cultural sensitivity. Interventions that challenge stigma and mens' reluctance to disclose problems associated with PCa and treatment may encourage help-seeking for symptom support. Research is needed to determine how best awareness-raising messages should be conveyed to black men.

Barriers and facilitators to accessing and utilising post-treatment psychosocial support by Black men treated for prostate cancer—a systematic review and qualitative synthesis

“…The ten qualitative studies [ 29 – 38 ] were published between 2004 and 2020 and conducted in the UK [ 32 , 34 , 36 – 38 ], USA [ 29 , 31 , 33 , 35 ] and Canada [ 30 ]. A total of 139 Black men (60 AA, 60 BC, 18 BA and 1 unspecified) aged between 49 and 85 years were included in the studies (Table 3 ).…”

“…… we have three or four who have had [PCa] and who have gone successfully for the treatment. We meet up and have a chat and a discussion about it...” (Participant quote [ 38 ] ) 2. Barriers to use of post-treatment psychosocial support a. Self as a barrier — underpinned by masculinity concerns and personality types i“…So, so what the difference that it makes to, it’s not going to affect me now because I’m, I’ve [passed that stage] with the prostate cancer…” (Participant quote [ 34 ] ) b. Healthcare system, structure and process as barriers i“…I don’t know who to go to for help here…” (Participant quote [ 32 ] ) ii“…(I went to see) the welfare rights and she was explaining to me that I could get help for certain things, but .…”

“…It’s not something that you can really talk about very much…”. (Participant quote [ 38 ] ) iii“… but Black men I think sexually tend to be quite private, erm we struggle to even have discussion with our peers about prostate cancer, … it’s a stigma sort of thing you know …” (Participant quote [ 36 ] ) d. Financial and physical health challenges i“…because I’m very concerned about the African American people…we have to do something about the number of people in this country who don’t have health insurance… That’s a gap right there. They don’t have the finances…” (Participant quote [ 31 ] ) ii“…I want to go to the gym soon, but like I said, because I’m so wet I won’t have – I’m hoping that it will ease up a little bit so I can get to do something else…” (Participant quote [ 34 ] ) iii“…I’m too old to go to the gym man.…”

“…Influence of others i“… Fantastic. The support and information I got from the NHS was really, really good…” (Participant quote [ 38 ] ) ii“…the main benefit was the sense that others shared his battle to overcome feeling ‘like a discard’ (‘I realize now that I’m not the only catfish in the sea’) …” (Participant quote [ 30 ] ) iii“…the TEN network which is an African-American support group…They were very supportive and connected me with guys who have gone through this before me…” (participant quote [ 35 ] ) iv“…There are so much knowledge and information and you feel so comfortable around the group because you know that they’ve gone through similar and you have that degree of understanding as well, cause your people can be understanding at a certain level but they have not been through it, you know…” (Participant quote [ 37 ] ) b. Self-motivation as informed by the illness experience and treatment side effects i“…You’ve got a bigger belly than you had before, and if you want- what do you want to get out of this?’ And I said, ‘I’d like to probably get my shape back, and just lose a little bit of weight…’ (Participant quote [ 34 ] ) ii“…so, I’ve got no qualms about speaking about it (prostate cancer diagnosis) …” (Participant quote [ 38 ] ). iii“…Both the survivors and spouses desired more information and guidance on techniques and resources to assist in the management of the effects of treatment on sexual functioning…” ( [ 33 ] 4.…”

“…My doctor before, Doctor M, told me that if I drink pomegranate juice it’s a little bit helpful as well…That’s what I buy, we buy, things, we buy pomegranate juice...” (Participant quote [ 34 ] ) ii“…Our study more specifically suggests that the experience of African-Caribbean men with prostate cancer would be improved through a more proactive approach to eliciting as well as giving information by healthcare professionals…” (Authors’ recommendation [ 32 ] ) iii“…He (the doctor) should have called her (patient’s wife) into the office and said, these are your new responsibilities, stick to them and it would help, and these are the reasons why it would help, and be beneficial in the end…” (Participant quote [ 30 ] ) b. Using culturally tested and acceptable channels i“…This study suggests local champions may also ‘pitch’ information in a culturally sensitive way...” (Authors’ recommendation [ 38 ] ) ii“…spiritual counselling was suggested by some participants as a valuable service for both cancer survivors and their spouses…” (Participants’ recommendation [ 33 ] ) Prioritising self-help, flexibility and autonomy i“…Na, because again I have to, they want, when I’m ready to do it they won’t be ready, that’s the problem. That’s why I have to do my own…” (Participant quote [ 34 ] ) d. Collaborative working between clinical and social networks i“…establishment of systematic links, referral procedures and information exchange between the GP, hospital, statutory social care agencies, the voluntary sector, local churches and community organisations would play an important role in improving the long-term quality of life of the most vulnerable African-Caribbean men with prostate cancer…” (Authors’ recommendation [ 32 ] ) e. Designing intervention content to appeal to Black men i“…Therefore, a dietary and physical activity intervention which enhances men’s autonomy, framed as helping men to regain fitness and aid post-treatment recovery and is aimed at men with elevated PSA may be appealing and acceptable to African Caribbean prostate cancer survivors...” (Authors’ recommendation [ 34 ] ) ii“…Most men (aged 70 and above) viewed themselves as too old to be playing sports and gentle exercise as safer and more appropriate for their age.…”