Abstract
Background
Prostate cancer (CaP) disproportionately affects 1-in-4 Black men and is a stigmatised disease within their communities. Yet, Black men are underrepresented in CaP research concerning stigma, which necessitates a scoping review to map available evidence on this topic to inform future research.
Aims
To map published literature on stigma related to CaP in Black men to understand their experiences and/or perceptions and identify directions for future research.
Methods
A scoping review was conducted using the five-step framework by Arksey and O’Malley. Studies published in English addressing stigma related to CaP from the perspectives of Black men and/or their families were included. We searched six databases including Medline, Embase, PsycInfo, CINAHL, Web of Science Core Collection and Google Scholar, from inception to April 2023. Citation searches were also conducted. Two independent reviewers conducted screening and data extraction. Data was synthesised using descriptive content analysis.
Results
Thirty-four eligible studies conducted in the USA, UK, Trinidad and Tobago, South Africa, Cameroon and Canada from 1995 to 2023 were included. A total of 1867 Black men with/without a CaP diagnosis and 145 adult partners were included. Review findings showed a complex intersection of self-stigma, public stigma and structural stigma impacted Black men’s perceptions of their masculinity. While men’s experiences/perceptions of stigma varied depending on their illness status, there were commonalities in their masculinity concerns (underpinned by stigma), which influenced their attitude towards digital rectal examination, post-treatment side effects and social interactions on CaP. These have implications for public health messaging on CaP within Black communities, as well as patient-provider interactions with the men.
Conclusions
This novel review highlights the need to pay attention to how CaP is presented to Black men and their communities using avenues and languages that are culturally acceptable and empower them to negotiate self-stigma, public stigma and structural stigma related to CaP. Directions for further research were also identified.
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Background
Prostate cancer (CaP) is the second leading cause of male cancer mortality (after lung cancer) globally, with over 1.4 million cases and 375,000 deaths worldwide in 2020 [1]. In the United Kingdom (UK), CaP is the most common male cancer, affecting over 140 men daily and this incidence is projected to increase by 12% by the year 2035 [2]. While no preventable factor has been associated with CaP, it disproportionately affects 1 in 4 Black men (men of African and/or Caribbean ancestry including Black African, Black Caribbean, Black British and African American) compared with 1 in 8 White and 1 in 13 Asian men [3]. Amidst this disparity, CaP remains a stigmatised disease within Black communities across diverse settings [4,5,6,7]. Evidence shows that socio-cultural stigmatisation of CaP among Black communities substantially contributes to delays in help-seeking for early diagnosis. Such delays in help-seeking lead to more advanced stages of CaP at diagnosis [8], poorer survival rates [9], more intensive treatment procedures (leading to complicated and chronic side-effects) [10, 11], and reduced quality of life for men and their partners [12,13,14].
Little is known regarding what contributes to and constitutes stigma in relation to CaP, particularly among Black men as the majority of available research on stigma and health has predominantly focused on HIV/AIDS [15, 16], obesity [17, 18], leprosy [19] and mental health issues [20]. Findings from these studies show that stigma involves socially constructed negativity towards an individual or a group of people due to their physical, mental or social attributes, including illness conditions. Within the limited literature on CaP in Black men, evidence suggests that stigma may emanate from self, social or interpersonal perceptions of screening procedures (e.g. digital rectal examination) as emasculating [4, 21]; a CaP diagnosis as imminent death [13], post-treatment side-effects (e.g. sexual dysfunction) of CaP as leading to diminished masculinity (e.g. impotence, inability to meet breadwinning obligations) [7] and uptake of psychosocial support as a sign of weakness [22]. However, there remains a very limited understanding regarding the sources of stigma related to CaP and its impact on help-seeking for diagnosis, treatment decision-making, social communications, spousal intimacy, psychosexual support uptake and post-treatment quality of life within the Black cultural context.
A recent review by Larkin et al. [23] sought to evaluate primary stigma domains in relation to patient outcomes and disease management among men of different ethnicities with CaP. However, this was a systematic review of men from different ethnic groups and cited only two studies which reported specific data on Black men. The review reported very limited data which predominantly focused on self-stigma expressed through illness non-disclosure among Black men in the two studies. A comprehensive scoping review that specifically maps wider evidence on stigma within the context of Black men will guide future research in this area. Also noting that stigma is often enacted through social interactions and can vary depending on illness type and socio-cultural context [24], the importance of understanding its impact on the lives of Black men and partners within the CaP context, is sorely needed. Pryor and Reeder [25] developed a conceptual model to enhance understanding of stigma and identified four dimensions: (i) self-stigma, (ii) public stigma, (iii) stigma by association and (iv) structural stigma (Table 1). Evidently, there are complex intersections between an individual’s self-perception and the social identities associated with their circumstances, which may in turn impact their self-esteem, health behaviours and the quality of their relationship with others [26].
Therefore, this scoping review aimed to (i) map the current state of evidence on stigma related to CaP in Black men and (ii) contextually understand Black men’s experiences and/or perceptions of stigma related to CaP. Noting the dearth of research in this area, this review would also help to identify specific directions for future research. Such future research would be essential to inform the development of evidence-based, tailored and strategic educational interventions which would be personally, socially and culturally acceptable to tackle stigma and improve the knowledge, attitude and practices towards CaP among Black men and their communities.
Methods
Study Design
The review was conducted using the five-step framework recommended by Arksey and O’Malley [27]: (1) identifying the research question; (2) identifying the relevant studies (defining the inclusion and exclusion criteria); (3) searching and selecting the evidence; (4) charting the evidence and (5) collating, summarising and reporting the evidence. The review protocol was published on the Open Science Framework (OSF) website (https://osf.io/k5ptc.). The review is reported in line with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) Checklist [28].
Identifying the Research Question
The review addressed two research questions (i) what is the current state of evidence on stigma related to CaP in Black men? and (ii) what are the experiences and/or perceptions of stigma related to CaP among Black men?
Identifying Relevant Studies (Defining the Inclusion and Exclusion Criteria)
Relevant studies were identified using defined inclusion and exclusion criteria as guided by the PCC (Population, Concept and Context) framework for non-intervention studies [29] (Table 2). Regardless of their methodological designs, studies were included if they were published in English language and (a) reported on perceptions, beliefs or experiences of stigma among adult Black men, their partners or family members in relation to CaP and (b) contextualised stigma related to CaP (e.g. around the early presentation of symptoms, help-seeking for early diagnosis, screening uptake, treatment decision-making, spousal communication, social interactions, uptake of post-treatment support and coping and social support). Studies which lacked methodological detail or empirical data (such as commentaries and editorials) and non-English studies were excluded (due to non-availability of resources for transcribing).
Searching and Selecting the Evidence
A comprehensive search was conducted on a range of sources likely to retrieve relevant material for our research questions based on early scoping. These include the large biomedical databases Medline All (from 1946) and Embase (from 1974) both via OVID, more specialist databases covering behavioural and social sciences (PsycINFO from 1967) via OVID and nursing and allied health (CINAHL Complete via EBSCOhost, multidisciplinary indexes [Web of Science Core Collection, including SCI-Expanded, SSCI, Arts and Humanities Citation Index, Conference Proceedings Citation Index, Emerging sources via Web of Science) and Google Scholar. Grey literature (reports and unpublished studies) was identified by conducting additional searches on Prostate Cancer UK and Movember websites and consultation with professional colleagues. The database search was developed initially in OVID Medline by an experienced information specialist (SG) by examining relevant items potentially meeting the review’s criteria retrieved during a focused search and a previous review [22]. Forward and backward citation searching was performed: the reference list of included studies and related reviews was hand-searched and forward citations of included studies were identified using Citation Chaser software [30]. Initial searches were completed on 05–07 July, 2022. Databases were searched from their inception dates and no language or date limits were applied. An update search for all databases was conducted on 03 April 2023 with results limited to items added to each since the initial searches were conducted.
The search development process tested the combination of four main search concepts (Black men, prostate cancer, stigma, sexual dysfunction) and their indexed and free-text synonyms to retrieve relevant studies. As early testing revealed the possibility of missing studies relevant to our population (e.g. where ethnicity was not explicitly stated in the abstract or indexed terms but a sub-group analysis was provided in the full paper), we used a multi-component search. As early scoping searches indicated that there was very little research published before 1990 on the concepts of prostate cancer AND stigma, our search did not explicitly include outdated terms for Black people. After testing and refinement of the Medline search strategy and peer review by another team member (OB), this was translated for use in other databases. Details of the database and supplementary searches are provided in Appendix 1. Search results were downloaded into Endnote bibliographic software and deduplication was undertaken using a systematic method [31]. The search is reported according to PRISMA-S extension [32].
Following the removal of duplicates, the remaining records were uploaded into Covidence software [33] for screening to enhance transparency. The titles and abstracts of retrieved studies were independently screened by at least two reviewers (OB with SG, BUK or VN) to remove irrelevant articles. Full text of potentially relevant articles was then screened against the review’s inclusion and exclusion criteria. Differences in opinion were resolved through discussion to reach a mutual agreement. The study screening and selection process is reported according to the PRISMA-ScR guideline [28] (Fig. 1).
Charting the Evidence
Data from the included studies were extracted as relevant to the review aims and presented in Table 3.
Data charting was done using a tested MS-Excel by two reviewers (OB with SG or BUK or OT or VN) and any arising conflicts were resolved by discussion. In line with the Arksey and O’Malley [27] framework used to guide the review, we did not perform a quality assessment of the included studies as the aim was primarily to summarise published work on stigma related to CaP in Black men and identify evidence gaps to inform future research, policy and practice. This helped to ensure an inclusive approach to addressing the review aims rather than excluding studies based on quality [34]. General characteristics of each study were extracted including: authors/year of publication, country, study aims, study design, sample, perceptions/experiences of stigma in relation to prostate cancer, the context of stigma, dimensions of stigma, study limitations and directions for future research.
Synthesis of Data
Data was synthesised using a descriptive qualitative content analysis [35] which involved three stages: preparation, organising and reporting [36]. In the preparation stage, a deductive approach was considered appropriate to enable data mapping to an existing theoretical framework on stigma by Pryor and Reeder [25]. In the organising phase, each included study was iteratively read to enable an in-depth understanding of where and how the data addressed the review questions. Relevant data were then extracted and mapped to the dimensions of stigma as postulated by Pryor and Reeder [25]’s conceptual model (Fig. 2) as well as the review questions to ensure clarity on the context and implications of stigma. The final stage of data reporting is discussed next in step 5. Data synthesis was done by the first reviewer (OB) and reviewed by other members of the team.
Results
Overview
A total of 2017 studies were retrieved from which 612 duplicates were removed. One thousand four hundred and five studies were screened for eligibility of which 1371 studies were excluded during the two-stage screening process. A final 34 eligible studies were included in the review.
Collating, Summarising and Reporting the Evidence
Evidence was collated, summarised and reported under two broad themes to address the review questions as follows: (i) the current state of evidence on stigma related to CaP in Black men and (ii) experiences/perceptions of stigma related to CaP in Black men. The implications of review findings, recommended strategies to address CaP-related stigma within the Black community and directions for future research are enumerated later in the discussion section.
Current state of Evidence on Stigma Related to CaP in Black Men
Thirty-four studies conducted between 1995 and 2023 were eligible for inclusion in the review. More than half (n = 19) of these studies were conducted in the USA [37,38,39,40,41,42,43,44,45,46,47,48,49,50,51,52,53,54,55]. Eight studies were conducted in the UK [4, 56,57,58,59,60,61,62], three in Trinidad and Tobago [63,64,65], two in South Africa [66, 67], one in Cameroon [68] and one in Canada [69] (Fig. 3).
The included studies involved approximately 1867 Black men with and without a CaP diagnosis (African American, Black African, Black Caribbean, African Nova Scotian) and 145 female partners (some studies did not report sample size and ethnicity of partners) all aged 18 years and above. Detailed characteristics of the studies are presented in Table 3.
Methodologically, the included studies were of heterogeneous designs with the majority (n = 27) being qualitative research using focus groups (n = 15) [38,39,40,41,42, 45,46,47, 49, 50, 52, 53, 64, 69, 70], semi-structured interviews (n = 11) [4, 44, 45, 55, 56, 59, 61, 64,65,66,67], case study (n = 2) [48, 60] or ethnography (n = 1) [51]. Other study designs used were systematic review (n = 3) [57, 58, 62], surveys (n = 1) [37] and mixed methods (n = 2) [43, 54]. The majority of the studies involved men without a CaP diagnosis (hereunto defined as “healthy” men within the context of this review). This is reflected in the diversity of views and experiences reported across the studies. This is reported next.
Experiences/Perceptions of Stigma Related to CaP Among Black Men
This is reported under two subthemes: lived/perceived experiences of stigma and dimensions of stigma.
Lived/Perceived Experiences of Stigma
Variations existed in how men described stigma as this seemed to have been shaped by their illness status (Table 3). Findings suggest that having a lived experience may have focused some men’s narratives around illness non-disclosure [37, 61,62,63, 68], feelings of marital insecurity [49, 65] and diminished masculinity due to post-treatment side effects such as sexual dysfunction [38, 40, 47, 48, 50, 51, 53, 55,56,57, 59, 61, 62, 68]. However, there were recurring themes around men’s perceptions of stigma which reverberated across the majority of the studies, regardless of illness status. Prominent among these were personal masculinity concerns and avoidance of social interactions on the CaP topic.
Masculinity concerns were mostly expressed through body embarrassment resulting from post-treatment side effects such as sexual dysfunction and urine incontinence [38, 40, 43, 47,48,49,50,51,52,53,54,55,56,57, 59, 61, 62, 68, 69]. There were also sexuality concerns about screening procedure via Digital Rectal Examination (DRE) which was perceived as an “assault on manhood” [Participant quote, 38], “embarrassing and emasculating” [Participant quote, [65]] and homosexual behaviour which was noted as a cultural taboo within their setting [4, 42, 44, 46, 48, 63,64,65]. Men in the studies further reported a perceived threat of CaP to the fulfilment of their socio-cultural masculine expectations such as stoicism, sexual potency, self-sufficiency and heterosexuality [43, 54, 55, 59]. Men expressed a need to maintain the privacy of an intimate body part (the prostate) [4, 69] as well as avoid the fear of being “laughed at” [participant quote, [49]] for sexual impotence following CaP treatment.
In many of the studies (n = 15), men reported stigma associated with the CaP illness itself, which is perceived as a taboo subject to be avoided in public discussions [39, 41,42,43, 45, 47, 52, 54, 57,58,59, 61, 63, 66, 68]. This was mostly attributed to perceptions of (i) imminent death following a cancer diagnosis and hospitals as “places where you go to die” [participant quote, [39]], (ii) CaP affecting men’s sexual lives [59] and a private body part “you don’t really want to reveal to people” [Participant quote, [70]], (iii) the prostate as a generational taboo which is not publicly talked about for “fear of being perceived as weak” [Participant quote, [43]], (iv) CaP viewed as an “infectious” disease in which the patient is stigmatised as “cancerous” [Participant quote, [67]], (v) avoiding being stigmatised or judged negatively by others as having lived a “reckless” life [Participant quote, [68]] and (vi) fear of social rejection [57]. In one of the studies [60], stigma was identified as a barrier to research participation as men were reluctant to invite others to participate in research on the CaP illness because they did not want to disclose their diagnosis within their wider social circle.
Dimensions of Stigma
Mapped to Pryor and Reeder’s [25] conceptual model of stigma, review findings showed that stigma was expressed in three out of the four dimensions identified in the model: self-stigma, public stigma and structural stigma (Fig. 2).
Self-stigma
Self-stigma has been described as an individual’s acceptance and internalisation of the negative beliefs and social reactions associated with having a perceived stigmatised condition [25]. In more than half of the studies (n = 22), participants expressed self-stigma as they seemed to accept and internalise the negative beliefs (e.g. “less of a man”) and social reactions (e.g. victim blaming) associated with being diagnosed with CaP [4, 37, 38, 40, 42, 46,47,48,49,50,51, 55, 56, 58, 59, 62,63,64,65,66, 68, 69]. This influenced their response to and engagement with CaP services. While men with a diagnosis of CaP in the included studies seemed to internalise personal stigma either due to the cancer diagnosis itself [66] or from post-treatment side effects [40, 49,50,51, 55, 56, 59, 61, 62, 65, 68]; those without a diagnosis expressed reluctance towards screening via DRE as they associated this with homosexual behaviour which was perceived as a taboo within their cultural setting [4, 38, 42, 46, 47, 58, 63, 69].
Public Stigma
Public stigma involves the social and psychological reactions of people to someone they perceive as having a stigmatised condition [25]. Beyond feelings of self-stigma, there were reiterations among participants across ten [38, 39, 42, 49, 57, 59, 61, 62, 66, 67] out of the 34 included studies, regarding how they perceived people within their social network (the public) generally viewed cancer and CaP in particular. Such views included perceptions of CaP as a taboo subject to be avoided in public discussions and a cancer diagnosis as imminent death [39] as well as linking CaP to men’s sexual lives which is not to be discussed in public settings [59, 61]. Men’s perceived public reactions of diminished masculinity following post-treatment sexual dysfunction further contributed to their reluctance to disclose the CaP illness diagnosis to avoid being rejected [57], labelled as “infectious” [66] or impotent [38, 62] within their social circle. This hindered some men in the included studies from accessing post-treatment psychosocial support [62]. Some men also expressed reluctance towards social interactions on prostate screening for fear of being perceived negatively [42] or “laughed at” [49] by their peers. Some men further reported feelings of marital insecurities [49] and perceptions of being judged by others as having lived a “reckless” life [67]. Whilst feelings of marital insecurity seemed to have emanated from the men themselves in one of the studies [49], there is no indication that partners stigmatise their spouse following a CaP diagnosis or that partners themselves were recipients of stigmatised attitudes from others (stigma by association).
Structural Stigma
Structural stigma involves the perpetuation of a stigmatised belief, attitude or person through institutional, cultural and systemic ideologies that legitimise people’s perceptions of a stigmatised status. Structural stigma was enacted in more than half of the included studies as reported by the men [n = 21 – 4, 37, 46, 48, 52, 54, 57, 59, 63, 65, 66, 68]. Findings from the review hinted at a systemic perception of cancer as a death sentence [39, 41, 68]; and CaP as a socio-cultural taboo which cannot be discussed freely within the Black communities [37, 42, 43, 60, 66, 68]. This in turn seemed to legitimise the reluctance of many Black men to engage in social interactions on CaP as described in many of the studies [39, 41, 42, 52, 54, 58]. There were reports in some of the studies, of cultural expectations for men to be stoic and avoid public discussions on their sexual inadequacies or concerns [43, 59]. Structural stigma was further expressed in some of the studies as systemic homophobic perceptions of DRE as homosexuality which was reported as culturally stigmatised within Black communities [4, 44,45,46, 48, 53, 58, 63, 65].
Discussion
Review findings showed that CaP impacted men’s perceptions of their masculinity leading to feelings of self-stigma and public stigma. Wider research on White men [71,72,73] reinforces the impact of CaP on men’s perception of their masculinity post-treatment for CaP regardless of their ethnicity. Evidence highlights that masculinity concerns (as reported by men in the included studies) contribute to a higher risk of mental health issues among men with CaP compared with those in the general population [73]. For Black men, these may have been further aggravated by inherent socio-cultural hegemonic masculine expectations (such as stoicism, independence, leadership, sexual potency and virility) within their cultural settings [74,75,76]. Underpinned by structural stigma, Black men in the studies felt obliged to uphold cultural masculinity expectations regardless of their challenges, including a CaP diagnosis and associated sequelae.
Wider research highlights an association between stigma and reduced marital satisfaction as well as challenges in relationship communication and depression among people with a lung cancer diagnosis [77]. This resonates with evidence in the current review. However, there are indications that some Black men’s feelings of marital insecurities and communication challenges on treatment side effects may have been predicated by their masculinity concerns and self-stigma rather than public stigma [14]. Despite men’s reported feelings of marital insecurity, partners’ perspectives were not reported in any of the studies. Hence, it remains unclear the implications of stigma on partners’ lived experience of being in marital relationship with a man diagnosed with CaP within the Black cultural context. This warrants further investigation in future studies.
Implications for Practice
Review findings showed that experiences and/or perceptions of stigma influenced how Black men responded to CaP. These included reluctance towards social discussions on the disease, presentation delays and reluctance or total avoidance of diagnostic tests especially DRE due to sexuality concerns as influenced by the perceived cultural interpretation of the procedure [39, 41, 42, 45, 46, 63, 65, 69] especially where such procedure is performed by a male doctor [64].Although the included studies did not report demographic data on men’s sexual orientation (see Table 3), it appeared they were mostly heterosexual based on their perceived cultural interpretation of DRE and feelings of embarrassment associated with the procedure. Whilst this has historically been the case (most of the studies which reported on this are older), the changing dynamics of Western society suggest a social shift in the society respecting people’s decision regarding their sexuality as a driver to advance equity, diversity and inclusion.
Arguably, inherent cultural stereotypes and beliefs may have changed over time among ethnic migrants due to acculturation to their host Western country [78]. However, Brown [79] argues that despite acculturations with those from other ethnic groups, people still substantially uphold their indigenous cultural beliefs and attitudes which may influence their social interactions and response to health messages and procedures. This has implications for structural stigma related to CaP screening via DRE and highlights the need to pay attention to how DRE is presented to Black men using avenues and languages that are culturally acceptable to them, as well as showing sensitivity to men’s sexual orientation where they are comfortable to discuss this during patient-provider consultations. As stage at diagnosis is an important predictor of survival and post-treatment quality of life [9], the importance of early presentation of CaP symptoms and diagnosis for high-risk Black men cannot be understated.
Self-stigma, public stigma and structural stigma had implications for men’s decision-making regarding treatment choice and timing [50, 51, 55, 56, 60, 62] as expressed through the psychosocial impact of treatment side effects (such as sexual dysfunction, urine incontinence, fatigue) on masculinity ideologies and functions. This accentuates the challenges of making decisions for CaP treatment among Black men seeing the complex intersection of cultural masculine expectations with a high risk of aggressive CaP, younger age at diagnosis [21, 80], treatment side effects [71], structural barriers to healthcare access [81] and patient-doctor communication issues [73].
Review findings further showed an interplay of self-stigma, public stigma and structural stigma had implications for social communications on CaP within Black communities as men expressed reluctance to either broach or engage in such discussions. Socio-cultural taboos around cancer discussions especially where intimate body parts are affected, have been reported in wider literature as a barrier to help-seeking for cancer symptoms (e.g. breast, cervical and ovarian cancers) among people across different ethnicities [82]. This reinforces the complexity of untangling the nuanced influence of cultural beliefs and gender roles and identities on the uptake and utilisation of cancer services. Members of men’s social circle attributing a CaP diagnosis to having lived a “reckless” life (public stigma) further reinforces the concept of “victim-blaming” which has been shown to have an impact on help-seeking for early diagnosis of stigmatised health conditions including lung cancer [77], HIV/AIDS [15] and Obesity [17].
Recommended Strategies to Address Prostate Cancer-Related Stigma within Black Communities
As explained by theories of intersectionality [83, 84], tackling stigma associated with CaP can be challenging considering its intricate intersection with wider individual (e.g. gender, socio-economic status), social (e.g. culture/acculturation, masculinity), systemic (e.g. healthcare service provision) factors as well as intergenerational cultural beliefs within Black communities. This suggests that stigma cannot be tackled in isolation but there is a need to work collaboratively and in partnership with Black communities, to explore culturally appropriate approaches to negotiate self-stigma, public stigma and structural stigma related to CaP. Wider research on HIV/AIDS testing [85, 86] and COVID-19 vaccination [87] highlights the importance of partnering with local and trusted communities to co-produce effective strategies to tackle illness-related stigma and promote positive help-seeking behaviours among underserved communities.
An essential starting point to achieving this is increased public health education and awareness campaigns within Black communities, on the risk factors for CaP to debunk common misconceptions about a perceived association between lifestyle and a CaP diagnosis. Moreover, such awareness campaigns can build on the recent increase in public discussions and disclosure of the cancer illness (which used to be a taboo subject) within mainstream society as accelerated by technological advancements in cancer diagnostic and treatment procedures, the influence of social media and involvement of relatable celebrity figures to disseminate cancer messages within local communities.
Recently, innovative approaches have been introduced in some areas of the UK, for example mobile drop-in clinics for men’s health checks where urological concerns can be raised along with general health issues (The ManVan project) [88]. However, these initiatives have generally focused on encouraging early help-seeking for urological concerns (including CaP) among men within the wider population. The initiatives have not yet been evaluated to assess effectiveness in achieving early help-seeking, especially for Black men in relation to CaP. Future evaluation studies are needed in this regard, especially targeting uptake and impact on CaP outcomes in Black men. Essentially, public health messaging on CaP within Black communities should be appropriately tailored using languages, communication channels (including social media and peer champions) and timing that is best suited to men’s circumstances and where they are at in the disease pathway (e.g. pre-diagnosis, treatment stage, post-treatment). For example, to avoid notions of “victim-blaming” (public stigma) and empower men to seek timely help (including feeling confident to request a diagnostic test from their doctors), public health messaging on early diagnosis should emphasise core risk factors for CaP, including having a family history of CaP or breast cancer and being of Black African or Caribbean heritage [3]. The importance of early diagnosis and timely treatment as predictors of improved survival rates [9] should also be clearly communicated to enhance men’s understanding of the link between CaP diagnosis and clinical outcomes. This could potentially help to change their mindset towards DRE if it is clinically recommended as a diagnostic procedure [4]. Providing factual information on treatment side effects (such as sexual dysfunction) using Black peer champions that men respect and can relate with (something like a “personal buddy initiative”) can also help them to appreciate such experiences are not peculiar to them and empower them in navigating self-stigma and masculinity concerns associated with treatment side effects.
The concerns of Black men in this review, regarding the implications of DRE on their personal and social perceptions of their masculinity and sexuality cannot be ignored. This suggests the need for cultural humility in patient-provider communication on CaP diagnostic tests. There is a need for clinicians to have the necessary cultural humility (open-mindedness) to engage Black men in CaP discussions without trivialising or disrespecting their cultural values or concerns and to explain DRE as a medical procedure. The language used to describe the exam should be devoid of any sexual connotation. For example, clinicians could use the phrase “examine the prostate” not “feel the prostate” while explicitly framing the test as a medical procedure [44]. Policymakers and cancer service providers should further engage with relevant community-based organisations to explore culturally appropriate ways of addressing the concerns of Black men in relation to CaP. Embedding the three dimensions of stigma highlighted in this review within this dialogue will also help to inform the co-development and—rollout of services that meet the needs of Black men along the CaP pathway.
Study Strengths, Limitations and Directions for Future Research
This review makes important contributions to knowledge by being the first (to the best of our knowledge) to map published literature on stigma related to CaP in Black men. The review was rigorously conducted using reproducible methods guided by validated frameworks (PRISMA guidelines and Arksey and O’Malley’s [27] framework for scoping reviews), transparent reporting and an interdisciplinary team (with subject and methodological expertise, including an information specialist). However, as early scoping searches indicated that there was very little research published before 1990 on the concepts of prostate cancer AND stigma, our search did not explicitly include outdated terms for Black people. Thus, there could be a low possibility of missing studies using outdated terms but this was minimised using supplementary searching (i.e. citation searching).
The review provides a broad overview of the experiences and/or perceptions of CaP stigma and the implications of these for policy and practice in CaP care provision and delivery for Black men. The review also identified some evidence gaps to inform future research. None of the 34 studies included in the review explicitly explored stigma as a research aim. Rather, stigma was inadvertently revealed as one of many other findings which suggests why some of the studies did not provide context as to how the stigma was expressed. There is a need for targeted research which quantitatively measures the prevalence of stigma within the context of CaP in Black men.
The majority of the studies were conducted in the US and predominantly involved men without a diagnosis of CaP. Disparities in men’s demography across diverse geographical contexts as shaped by immigration dynamics and family structures have implications for global health inequalities in CaP research, policy and practice for Black men. Hence, there is a need for more UK-based research with a focus on Black men with a diagnosis of CaP to contextually compare their experiences and/or perceptions of stigma with those not yet diagnosed with the disease.
Using longitudinal quantitative methods, future studies should investigate the influence of age on perceptions of CaP stigma and how this may vary over different generations as the influence of generational differences on perceptions of stigma remains unclear. Such longitudinal research will help to examine if there is a cultural shift in mindset across generations, what factors contribute to this and how it could potentially guide the development of future strategies to improve CaP awareness and positive action within Black communities.
The inconsistent reporting of participants’ demographics across the studies (especially on sample size and ethnicity of partners) highlights the challenges of understanding the implication of stigma on marital relationships on the partners themselves from their perspectives. In their conceptual framework, Pryor and Reeder [25] describe “stigma by association” as a dimension of stigma that involves people’s reactions to being associated with a person with a stigmatised condition and the societal reactions they receive from others because of such association. The current dearth of research on partners of Black men particularly highlights a very limited understanding of their experiences of stigma and its psychosocial implication for being in marital relationships with Black men diagnosed with CaP. With CaP now widely acknowledged as a couple’s disease [89], the unfavourable impact of men’s diagnosis on their partners’ psychosocial well-being cannot be ignored. Moreover, the critical role of partners in supporting men on their CaP journey is widely recognised [89, 90] and reinforces the need for targeted research on this population using qualitative methods to unearth their experiences/perceptions of stigma.
There is further need for intervention studies, to co-produce with Black communities, culturally appropriate resources and initiatives to demystify CaP and empower men to negotiate stigma related to the illness. Evaluation studies will further help to assess the effectiveness of such interventions in facilitating early diagnosis and improved CaP outcomes in Black men.
Conclusion
CaP is a stigmatised disease within Black communities leading to delays in help-seeking for early diagnosis, poorer survival rates and reduced quality of life among survivors and their partners. This review aimed to map published literature on stigma related to CaP in Black men and contextually understand their experiences and/or perceptions of stigma. A complex intersection of self-stigma, public stigma and structural stigma impacted men’s perceptions of their masculinity and impacted their response to diagnostic tests (in particular DRE), treatment decision-making and social interactions on CaP. There is a need for culturally appropriate multidimensional approaches to empower Black men and their communities to negotiate stigma related to CaP. This will help to normalise social discussion CaP, encourage early help-seeking for diagnostic, treatment and post- treatment cancer services, as well as advance equity in CaP care for Black men.
Data Availability
The data used in this review are publicly available and included in the manuscript (see data extraction table and reference list). Full details of data availability are included in Appendix 1.
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Funding
No funding was received for conducting this review but OB and SG’s time are funded by Yorkshire Cancer Research under the TRANSFORM programme (Award reference number HEND405SPT).
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OB conceived the study. OB, SG and VN contributed to the study design. Material preparation, data collection and analysis were performed by OB, SG, VN, OT and BUK. The first draft of the manuscript was written by OB and all authors commented on previous versions of the manuscript. All authors read and approved the final manuscript.
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Appendix
Appendix
Full Search Strategies
Database: Medline All from 1946
Platform: OVID
Date of last search: 3rd April 2023
-
1.
(black* or african* or caribbean or african-caribbean* or afro-caribbean* or african american* or (ethnic adj3 minorit*)).ti,ab,kw.
-
2.
African Americans/ or African Continental Ancestry Group/ or Caribbean region/ or exp Blacks/
-
3.
exp Africa/eh
-
4.
exp Caribbean Region/eh
-
5.
(BME or BAME).ti,ab,kw.
-
6.
BIPOC.ti,ab,kw.
-
7.
1 or 2 or 3 or 4 or 5 or 6 [Black men concept]
-
8.
exp Prostatic Neoplasms/
-
9.
(prostat* adj2 (cancer* or neoplasm* or tumor or tumour* or malign* or carcinoma* or metasta* or oncolog*)).ti,ab,kw.
-
10.
(Cancer Survivors/ or (cancer* adj2 survivor*).ti,ab,kw.) and prostat*.ti,ab,kw.
-
11.
8 or 9 or 10 [prostate cancer concept]
-
12.
social isolation/ or ostracism/ or social marginalization/ or social stigma/
-
13.
stereotyping/
-
14.
social perception/ or perceived discrimination/ or social cognition/
-
15.
Adaptation, Psychological/
-
16.
Emotional Adjustment/
-
17.
shame/ or embarrassment/
-
18.
Masculinity/
-
19.
Prejudice/
-
20.
Social Discrimination/
-
21.
Self Concept/
-
22.
Bullying/
-
23.
(stigma* or blam* or prejudice* or shame* or discrimin* or bully* or teas* or stereotyp* or misconception* or masculinity).ti,ab,kw.
-
24.
((public* or community or social or popular) adj perception*).ti,ab,kw,kf.
-
25.
or/12–24 [stigma]
-
26.
exp Erectile Dysfunction/
-
27.
Sexual Dysfunction, Physiological/ or Sexual Dysfunctions, Psychological/
-
28.
Ejaculation/
-
29.
Penile Erection/
-
30.
Sexuality/
-
31.
sexual partners/ or spouses/
-
32.
(sex* adj3 (dysfunction* or symptom* or health or behaviour* or behavior* or problem* or side effect* or consequence* or bother* or function* or performance*)).ti,ab,kw,kf.
-
33.
(intimacy or impoten* or intimate relationship* or erectile dysfunction or low libido or ejaculat*).ti,ab,kw,kf.
-
34.
or/26–33 [sexual dysfunction]
-
35.
7 and 11 and 25 and 34
-
36.
11 and 25 and 34
-
37.
7 and 11 and 25
-
38.
7 and 11 and 34
-
39.
35 or 36 or 37 or 38
Database: Embase from 1974
Platform: OVID
Date of last search: 3rd April 2023
-
1.
(black* or african* or caribbean or african-caribbean* or afro-caribbean* or african american* or (ethnic adj3 minorit*)).ti,ab,kw.
-
2.
black person/ or african american/ or african brazilian/ or african caribbean/ or exp "ethnic or racial aspects"/
-
3.
(BME or BAME).ti,ab,kw.
-
4.
BIPOC.ti,ab,kw.
-
5.
or/1–4 [ Black men concept]
-
6.
exp prostate cancer/
-
7.
(prostat* adj2 (cancer* or neoplasm* or tumor or tumour* or malign* or carcinoma* or metasta* or oncolog*)).ti,ab,kw.
-
8.
(cancer Survivor/ or (cancer* adj2 survivor*).ti,ab,kw.) and prostat*.ti,ab,kw.
-
9.
6 or 7 or 8 [prostate cancer concept]
-
10.
stigma/
-
11.
social stigma/
-
12.
social isolation/ or social alienation/
-
13.
ostracism/ or social exclusion/ or social rejection/
-
14.
stereotyping/
-
15.
masculinity/
-
16.
shame/
-
17.
embarrassment/
-
18.
social discrimination/
-
19.
bullying/
-
20.
(stigma* or blam* or prejudice* or shame* or discrimination or bully* or teas* or stereotyp* or misconception* or masculinity).ti,ab,kw.
-
21.
((public* or community or social or popular) adj perception*).ti,ab,kw,kf.
-
22.
or/10–21 [stigma]
-
23.
impotence/ or erectile dysfunction/ or organic impotence/ or psychogenic impotence/
-
24.
male sexual dysfunction/ or ejaculation disorder/ or potency disorder/ or premature ejaculation/
-
25.
penis erection/
-
26.
sexuality/
-
27.
spouse/
-
28.
(sex* adj3 (dysfunction* or symptom* or health or behaviour* or behavior* or problem* or side effect* or consequence* or bother* or function* or performance*)).ti,ab,kw,kf.
-
29.
(intimacy or impoten* or intimate relationship* or erectile dysfunction or low libido or ejaculat*).ti,ab,kw,kf.
-
30.
or/23–29 [sexual dysfunction]
-
31.
5 and 9 and 22 and 30
-
32.
5 and 9 and 30
-
33.
5 and 9 and 22
-
34.
9 and 22 and 30
-
35.
31 or 32 or 33 or 34
Database: APA PsycInfo from 1967
Platform: OVID
Date of last search: 3rd April 2023
-
1.
blacks/ or african cultural groups/
-
2.
(black* or african* or caribbean or african-caribbean* or afro-caribbean* or african american* or (ethnic adj3 minorit*)).ti,ab,id.
-
3.
(BME or BAME).ti,ab,id.
-
4.
BIPOC.ti,ab,id.
-
5.
or/1–4 [Black men concept]
-
6.
exp Prostate/ and exp Neoplasms/
-
7.
(prostat* adj2 (cancer* or neoplasm* or tumor or tumour* or malign* or carcinoma* or metasta* or oncolog*)).ti,ab,id.
-
8.
6 or 7 [prostate cancer concept]
-
9.
stigma/ or social perception/ or mental health stigma/ or self-stigma/ or labeling/ or prejudice/ or social acceptance/ or social discrimination/ or stereotyped attitudes/
-
10.
shame/ or embarrassment/
-
11.
exp Masculinity/
-
12.
(stigma* or blam* or prejudice* or shame* or discrimin* or masculinity or bully* or teas* or stereotyp* or misconception*).ti,ab,id.
-
13.
((public* or community or social or popular) adj perception*).ti,ab,id.
-
14.
or/9–13 [stigma concept]
-
15.
sexual function disturbances/ or erectile dysfunction/ or inhibited sexual desire/ or premature ejaculation/
-
16.
exp male orgasm/
-
17.
libido/
-
18.
sexual partners/
-
19.
exp spouses/
-
20.
(sex* adj3 (dysfunction* or symptom* or health or behaviour* or behavior* or problem* or side effect* or consequence* or bother* or function* or performance*)).ti,ab,id.
-
21.
(intimacy or impoten* or intimate relationship* or erectile dysfunction or low libido or ejaculat*).ti,ab,id.
-
22.
or/15–21 [sexual dysfunction concept]
-
23.
5 and 8 and 14 and 22
-
24.
5 and 8 and 22
-
25.
5 and 8 and 14
-
26.
8 and 14 and 22
-
27.
23 or 24 or 25 or 26
Database: CINAHL Complete
Platform: EBSCOhost
Date of last search: 3rd April 2023
# | Query |
---|---|
S1 | (MH "Prostatic Neoplasms + ") |
S2 | TI ( (prostat* N2 (cancer* OR neoplasm* OR tumor* OR tumour* OR malign* OR carcinoma* OR metasta* OR oncolog*))) OR AB ( (prostat* N2 (cancer* OR neoplasm* OR tumor* OR tumour* OR malign* OR carcinoma* OR metasta* OR oncolog*))) |
S3 | TI ( ((MH “Cancer Survivors”) OR (cancer* N2 survivor*)) AND prostat*) OR AB ( ((MH “Cancer Survivors”) OR (cancer* N2 survivor*)) AND prostat*) |
S4 | S1 OR S2 OR S3 [prostate cancer] |
S5 | (MH “Black Persons + ”) OR (MH “African Americans”) |
S6 | TI ( (black* OR African* OR Caribbean OR African-Caribbean* OR Afro-Caribbean* OR African American* OR (ethnic N3 minorit*))) OR AB ( (black* OR African* OR Caribbean OR African-Caribbean* OR Afro-Caribbean* OR African American* OR (ethnic N3 minorit*))) |
S7 | TI ( BME or BAME or BIPOC) OR AB ( BME or BAME or BIPOC) |
S8 | S5 OR S6 OR S7 [black men] |
S9 | (MH “Stigma”) |
S10 | (MH “Ostracism”) |
S11 | (MH “Stereotyping”) |
S12 | (MH “Shame”) OR (MH “Embarrassment”) |
S13 | (MH “Masculinity”) |
S14 | (MH “Discrimination”) OR (MH “Perceived Discrimination”) |
S15 | (MH “Bullying”) |
S16 | TI ( (stigma* or blam* or prejudice* or shame* or discrimin* or bully* or teas* or stereotyp* or misconception* or masculinity)) OR AB ( (stigma* or blam* or prejudice* or shame* or discrimin* or bully* or teas* or stereotyp* or misconception* or masculinity)) |
S17 | TI ( ((public* or community or social or popular) N1 perception*)) OR AB ( ((public* or community or social or popular) N1 perception*)) |
S18 | (MH “Sexual Dysfunction, Male”) OR (MH “Dyspareunia”) OR (MH “Erectile Dysfunction”) OR (MH “Premature Ejaculation”) OR (MH “Sexual Desire Disorders + ”) |
S19 | (MH “Sexual Partners”) |
S20 | (MH “Spouses”) |
S21 | TI ( (sex* N2 (dysfunction* or symptom* or health or behaviour* or behavior* or problem* or side effect* or consequence* or bother* or function* or performance*))) OR AB ( (sex* N2 (dysfunction* or symptom* or health or behaviour* or behavior* or problem* or side effect* or consequence* or bother* or function* or performance*))) |
S22 | TI ( (intimacy or impoten* or intimate relationship* or erectile dysfunction or low libido or ejaculat*)) OR AB ( (intimacy or impoten* or intimate relationship* or erectile dysfunction or low libido or ejaculat*)) |
S23 | S9 OR S10 OR S11 OR S12 OR S13 OR S14 OR S15 OR S16 OR S17 [stigma concept] |
S24 | S18 OR S19 OR S20 OR S21 OR S22 [sexual dysfunction] |
S25 | S4 AND S8 AND S23 AND S24 |
S26 | S4 AND S8 AND S24 |
S27 | S4 AND S8 AND S23 |
S28 | S4 AND S23 AND S24 |
S29 | S25 OR S26 OR S27 OR S28 |
Database: Science Citation Index Expanded from 1970, Social Sciences Citation Index from 1970,
Platform: Web of Science Core Collection
Date of last search: 3rd April 2023
Black* or african american* or african caribbean* (Topic) and “prostat* cancer*” (Topic) and impoten* or “erectile dysfunction” or “sexual dysfunction” or “sexual side effect*” (Topic) and MEDLINE® (Exclude – Database)
OR
Black* or african american* or african caribbean* (Topic) and “prostat* cancer*” (Topic) and stigma* or shame or embarrassment or stereotype* or masculinity (Topic)
OR
"prostat* cancer*" (Topic) and stigma* or shame or embarrassment or stereotype* or masculinity (Topic) and impoten* or “erectile dysfunction” or “sexual dysfunction” or “sexual side effect*” (Topic) and MEDLINE® (Exclude – Database)
Database: Google Scholar
Date of last search: 3rd April 2023
Search terms
“black men”| “african american”|African Caribbean “prostate cancer” stigma|sexual dysfunction
First 7 pages of results (sorted by relevance) cross checked against existing database results for unique studies
Forward Citation Searches
Studies used: 32 studies included after the initial searches were screened, 28 had PMID or DOI to be used for Citation searching in Citation Chaser on 3rd April 2023.
The 28 articles were cited a total of 815 times corresponding to 650 unique article IDs. These results were downloaded into the scoping review Endnote library and duplicates were removed. After searching these remaining results for Prostate AND black men AND stigma, 58 studies remained.
28 Articles Used for Citation Searches:
[37,38,39,40,41, 43, 44, 46, 47, 49, 50, 52,53,54, 56,57,58,59,60,61,62,63, 65, 66, 68, 69, King-Okoye et al., 2017 (not included in the final review]
Grey Literature
The websites of Prostate cancer UK and Movember were searched on 3rd April 2023 via Google Advanced search (limiting results to site or domain https://prostatecanceruk.org/ or https://uk.movember.com/) for stigma and black men but no additional results were identified.
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Cite this article
Bamidele, O., Greenley, S., Ukoha-Kalu, B.O. et al. A Scoping Review of Stigma Related to Prostate Cancer in Black Men. J. Racial and Ethnic Health Disparities (2024). https://doi.org/10.1007/s40615-024-02070-5
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DOI: https://doi.org/10.1007/s40615-024-02070-5