Life after prostate cancer: A systematic literature review and thematic synthesis of the post‐treatment experiences of Black African and Black Caribbean men

Evidence shows that there are significant ethnic variations in prostate cancer prevalence and outcomes. Specifically, Black African and Black Caribbean men may encounter different post‐treatment experiences than Caucasian men due to their disproportionately higher risk of being diagnosed with advanced prostate cancer. But to date, no review of these experiences has been undertaken. This review synthesised findings from existing literature on the post‐treatment experiences of Black African and Black Caribbean men with prostate cancer and identified pertinent issues which may be useful to inform practice and future research. Seven databases were systematically searched using developed search terms. Four qualitative studies were identified and critically appraised. Findings are summarised under four main themes: symptom experience, healthcare experience, marital and social relationships and coping strategies. Cultural definitions of masculinity influenced the meanings men gave to their post‐treatment experiences. While men's experiences of healthcare varied, the provision of professional support to address their post‐treatment distress was lacking. Men derived most support from wives, peers and church communities. A culturally sensitive approach which recognises diversity among Black African and Black Caribbean populations and treats individuals within their religious and socio‐cultural contexts could potentially improve men's post‐treatment experiences. Areas for further research were also identified.     

Sociocultural determinants of men's reactions to prostate cancer diagnosis

Objective: To develop a better understanding of how men react to being diagnosed with prostate cancer and identify factors that influence these responses, we conducted an observational study to identify sociocultural predictors of men's psychological reactions. Methods: Participants were 70 African American and 124 white prostate cancer patients who completed a structured telephone interview that evaluated psychological reactions in terms of intrusive thoughts about cancer and attempts to avoid cancer‐related thoughts and feelings. Perceptions of disease‐specific stress, cultural beliefs and values, and social constraints were also assessed during the interview. Results: There were no racial differences in men's reactions to being diagnosed with prostate cancer; however, greater perceptions of disease‐specific stress, increasing levels of present temporal orientation, and more social constraints had significant positive effects on avoidant reactions. Greater perceptions of stress also had a significant positive effect on intrusive thoughts. Conclusions: The results of this study highlight the need for individualized approaches to help men address their thoughts and feelings about being diagnosed with prostate cancer. These efforts should include strategies that help men to communicate more effectively with social support resources and address cultural beliefs and values related to temporal orientation. Copyright © 2009 John Wiley & Sons, Ltd.     

“Hard to reach,but not out of reach”: Barriers and facilitators to recruiting Black African and Black Caribbean men with prostate cancer and their partners into qualitative research

Access and recruitment barriers may have contributed to the underrepresentation of Black African/Caribbean men and their partners in current psychosocial research related to prostate cancer survivors. Whilst some studies have explored recruitment barriers and facilitators from participants’ perspectives, little is known from researchers' point of view. This paper aimed to address this gap in the literature. Recruitment strategies included the following: cancer support groups, researchers’ networks, media advertisement, religious organisations, National Health Service hospitals and snowball sampling. Thirty‐six eligible participants (men = 25, partners = 11) were recruited into the study. Recruitment barriers comprised of gate‐keeping and advertisement issues and the stigma associated with prostate cancer disclosure. Facilitators which aided recruitment included collaborating with National Health Service hospitals, snowball sampling, flexible data collection, building rapport with participants to gain their trust and researcher's attributes. Findings highlight that “hard to reach” Black African/Caribbean populations may be more accessible if researchers adopt flexible but strategic and culturally sensitive recruitment approaches. Such approaches should consider perceptions of stigma associated with prostate cancer within these communities and the influence gatekeepers can have in controlling access to potential participants. Increased engagement with healthcare professionals and gatekeepers could facilitate better access to Black African/Caribbean populations so that their voices can be heard and their specific needs addressed within the healthcare agenda.     

African American prostate cancer survivorship: Exploring the role of social support in quality of life after radical prostatectomy

Purpose: The aim of this study was to explore the African American prostate cancer survivorship experience following radical prostatectomy and factors contributing to quality of life during survival. Design: African American men who were part of a larger prostate cancer cohort were invited to participate in a focus group. Eighteen open-ended questions were designed by the study team and an experienced moderator to elicit participants' survivorship experiences. Results: Twelve men consented to participate in the study. Emergent themes included views of prostate cancer in the African American community, perceptions of normalcy, emotional side effects following radical prostatectomy, and social support involvement and impact during recovery. Conclusions: Previous findings suggest that African American men may experience more distress than Caucasian men when facing typical prostate cancer side effects. Traditional masculine role norms and negative perceptions of “disease disclosure” in the African American community could be contributing to the distress reported by some in this study. Strengthening social support systems by promoting more prosocial coping and help-seeking behaviors early in the survivorship journey may help bypass the detrimental health effects associated with masculine role identification, resulting in improved quality of life throughout the lengthy survival period anticipated for these men.     

The impact of supportive nursing care on the needs of men with prostate cancer: a study across seven European countries

Background:

Prostate cancer is for many men a chronic disease with a long life expectancy after treatment. The impact of prostate cancer therapy on men has been well defined, however, explanation of the consequences of cancer treatment has not been modelled against the wider variables of long-term health-care provision. The aim of this study was to explore the parameters of unmet supportive care needs in men with prostate cancer in relation to the experience of nursing care.

Methods:

A survey was conducted among a volunteer sample of 1001 men with prostate cancer living in seven European countries.

Results:

At the time of the survey, 81% of the men had some unmet supportive care needs including psychological, sexual and health system and information needs. Logistic regression indicated that lack of post-treatment nursing care significantly predicted unmet need. Critically, men''s contact with nurses and/or receipt of advice and support from nurses, for several different aspects of nursing care significantly had an impact on men''s outcomes.

Conclusion:

Unmet need is related not only to disease and treatment factors but is also associated with the supportive care men received. Imperative to improving men''s treatment outcomes is to also consider the access to nursing and the components of supportive care provided, especially after therapy.     

Self‐management for men surviving prostate cancer: a review of behavioural and psychosocial interventions to understand what strategies can work,for whom and in what circumstances

Objective: In the context of increasing prostate cancer survivorship, evidence of unmet supportive care needs and growing economic health‐care restraints, this review examined and evaluated best approaches for developing self‐management programmes to meet men's survivorship needs. Methods: A search of international literature published in the last 12 years was conducted. Only randomised controlled trials were included in the analysis. Key components of the interventions were evaluated to determine what has been offered, and which elements are most beneficial in improving health outcomes. Methodological issues were also considered. Results: Targeting participant need and promoting motivation to participate and maintain programme adherence were the most important factors to emerge in ensuring positive health outcomes. Both need and motivation are multi‐faceted, the components of which are identified and evaluated. Guidance was also identified in relation to delivery design, theoretical mechanisms for change, modes of delivery and facilitator issues. Conclusion: Self‐management is a viable and appropriate way of providing health‐care solutions to ameliorate men's functional and emotional problems associated with increased prostate cancer survivorship. Integration into clinical practice will require training, resources and commitment and, in addition, economic viability will be difficult to assess since cost comparison with current provision is not straightforward. Nevertheless, from the psychosocial and behavioural studies reviewed there is convincing evidence that can be used to design, implement and evaluate future self‐management programmes for men surviving prostate cancer. Copyright © 2010 John Wiley & Sons, Ltd.     

Examining Cultural Factors that Influence Treatment Decisions: a Pilot Study of Latino Men with Cancer

The objective of this study was to explore beliefs and treatment decisions of foreign-born Latino men from Cuba, Mexico, Colombia, and Venezuela, who have been diagnosed with cancer and who live in Central Florida, USA. Experiences related to knowledge of diagnosis, treatment decisions, communication with health providers, family involvement, and advance care planning (ACP) discussions following the diagnosis of cancer are central to this study. This study used qualitative in-depth semi-structured interviews and thematic analysis. The interviews were conducted with 15 Latino men who have been diagnosed with cancer within the past 5 years and who reside in the community. The interviews were conducted and transcribed in Spanish and then translated into English. The median age was 55.4 years. Nine Latino men had prostate cancer, two had brain cancer, two had colorectal cancer, and two had lung cancer. Emerging themes involved the suddenness of the diagnosis, fear of dying, expectations of diagnosis-related communication, reliance on physicians for treatment decisions, limited information pertaining to ACP, family support, and role changes. Latino men's limited knowledge of cancer diagnosis and treatment options coupled with their fear led them to immediately believe that they were going to die. Knowledge gaps regarding diagnosis-related communication, treatment decisions, and ACP varied among the men. The forthright diagnosis communication and the expectation to engage in decision making are contrary to Latinos men's beliefs of reliance on health providers decisions. The findings contribute to understanding Latino men's beliefs about a cancer diagnosis and treatment decisions.     

Distress,anxiety, depression,and emotional well‐being in African‐American men with prostate cancer

Objective: African‐American men have an incidence rate of prostate cancer 60% higher than Caucasian men. Over one‐quarter of men with prostate cancer experience significant distress, yet psychosocial research has rarely focused on African‐American men. This study presents novel data on emotional well‐being, distress, anxiety, and depression in African‐American men with prostate cancer. Methods: This archival research combined two databases (N=385 and N=367) comprised of 55 African‐American men with prostate cancer. Quality of life was assessed with the Functional Assessment of Cancer Therapy, distress was measured with the Distress Thermometer, and anxiety and depression were measured with the Hospital Anxiety and Depression Scale. African‐American and Caucasian men were matched on age, education, and stage of disease, and compared on emotional well‐being, distress, anxiety, and depression. Results: The mean age of the 55 African‐American was 63 years old. In non‐matched comparison, African‐American men had elevated levels of distress, anxiety, and depression similar to Caucasian men. African‐American men reported high levels of clinically significant distress (>31%) and anxiety (>23%). However, after matching the African‐American and Caucasian men, African‐American men reported higher mean scores on emotional well‐being (p<0.05) and a lower percentage of African‐American men displayed clinically significant depressive symptoms (p<0.05) compared with Caucasian men. Conclusions: After matching the sample, African‐American men seem to display a sense of resilience, demonstrating greater emotional well‐being and a lower incidence of clinically significant depressive symptoms, compared with Caucasian men. This is consistent with cross‐cultural research outside of prostate cancer. Continued research is needed to further elucidate the concept of resiliency in African‐American men with prostate cancer. Copyright © 2010 John Wiley & Sons, Ltd.     

Psycho‐social issues in long‐term survivors of testicular cancer: Directions for future research

Testicular cancer is the most common non‐skin cancer in young men and among the most curable of all neoplasms, making patients’ long‐term physical, psychological and social well‐being of major concern. To date, research on outcomes has been restricted almost entirely to survivors in Europe and the USA. The current article reviews the international literature with a view to developing directions for future research in the Asia–Pacific region. We conclude that planning interventions to improve outcomes awaits further, prospective, controlled studies aimed at establishing the predictive value not only of socio‐demographic, disease and treatment variables but also of psycho‐social variables underlying adjustment and recovery. Ideally, research of this kind would: (i) highlight aspects of the experience of testicular cancer and its treatment that might be targeted by changes to patterns of care, and (ii) identify groups at risk of poor outcomes who could be identified for early intervention through screening. Planning of prospective research would itself benefit from further, large‐scale, cross‐sectional research aimed at identifying those variables that would prove most informative when tracked over time. Exploratory research of this kind should be aimed at providing a snapshot of men's well‐being in the context of a comprehensive range of variables that include patterns of care, unmet needs, satisfaction with treatment and social support as well as disease and treatment variables. Outcome variables should include disease‐specific concerns such as psycho‐sexual problems as well as general physical, psychological and social well‐being.     

Ambiguity in a masculine world: Being a BRCA1/2 mutation carrier and a man with prostate cancer

Objective

Increased risk of prostate cancer (PCa) is observed in men with BRCA1/BRCA2 mutations. Sex and gender are key determinants of health and disease although unequal care exists between the sexes. Stereotypical male attitudes are shown to lead to poor health outcomes.

Methods

Men with BRCA1/2 mutations and diagnosed with PCa were identified and invited to participate in a qualitative interview study. Data were analysed using a framework approach. “Masculinity theory” was used to report the impact of having both a BRCA1/2 mutation and PCa.

Results

Eleven of 15 eligible men were interviewed. The umbrella concept of “Ambiguity in a Masculine World” was evident. Men's responses often matched those of women in a genetic context. Men's BRCA experience was described, as “on the back burner” but “a bonus” enabling familial detection and early diagnosis of PCa. Embodiment of PCa took precedence as men revealed stereotypical “ideal” masculine responses such as stoicism and control while creating new “masculinities” when faced with the vicissitudes of having 2 gendered conditions.

Conclusion

Health workers are urged to take a reflexive approach, void of masculine ideals, a belief in which obfuscates men's experience. Research is required regarding men's support needs in the name of equality of care.     

‘It's hard to take because I am a man's man’: an ethnographic exploration of cancer and masculinity

CECIL R., Mc CAUGHAN E. & PARAHOO K. (2010) European Journal of Cancer Care
‘It's hard to take because I am a man's man’: an ethnographic exploration of cancer and masculinity This paper reports on a study into male participation in cancer support groups, which elicited data on the impact of cancer on masculinities. This small qualitative pilot study, which took place in Belfast in Northern Ireland, involved semi‐structured interviews with eight men with a history of cancer who were no longer being actively treated (i.e. they were not receiving chemotherapy or radiotherapy), and who were proficient in spoken and written English. Whereas most studies into men with cancer that have looked at issues of masculinity have been on prostate and/or testicular cancer and have tended to focus upon sexual ability and activity, this study identified more sociological issues of concern that also present challenges to masculinity and to male identity. Economic concerns were identified as being major issues for men, as were their changing role vis‐à‐vis their family, friends and colleagues, and changes to their body and to their body image. The findings from this study indicate that cancer support services need to be gender sensitive in order to ensure that interventions do not undermine masculine values but address men's concerns and foster their positive coping strategies.     

Risk of prostate cancer among Swedish‐born and foreign‐born men in Sweden, 1961–2004

To elucidate the importance of environmental and genetic factors in prostate cancer etiology, we compared the risk of prostate cancer among foreign‐born men to that of Swedish‐born men in Sweden and to that in the country of origin. We estimated rate ratios (RRs) with 95% confidence intervals (CIs) adjusted for age, calendar period of year and education using Poisson regression in a cohort of 3.8 million men aged 45 years and older between 1961 and 2004. During the 45 years of follow‐up, 8,244 and 187,675 cases of prostate cancer occurred among foreign‐born and Swedish‐born men, respectively. Overall, foreign‐born men had a significantly 40% decreased risk of prostate cancer compared to Swedish‐born men (RR = 0.62, 95% CI = 0.61–0.63). Men born in Middle Africa and in the Caribbean had an increased risk (RR = 1.89, 95% CI = 0.95–3.78 and RR = 1.24, 95% CI = 0.71–2.19, respectively). The overall risk in both strata of duration of residence or age at immigration was lower among immigrants compared to Swedish‐born men. After additional adjustment for birthplace and age at immigration, although the risk remained lower among immigrants compared to Swedish‐born, but it was increased among immigrants who stayed 35 years and longer compared to those who stayed shorter (RR = 1.33, 95% CI = 1.21–1.46). Both environmental and genetic factors seem to be involved in the etiology of prostate cancer. Duration of residence was an important factor affecting the risk among immigrants. Studies focusing on the etiology of prostate cancer specifically in African immigrants and their descendants and increasing preventive and diagnostic activities on old immigrants are recommended. © 2008 Wiley‐Liss, Inc.     

Exploratory Study of Residents' Perceptions of a Housing Facility for Pediatric Patients and Family Members

Abstract

Men diagnosed with prostate cancer must make decisions about medical treatment in a context of high uncertainty. However, when making decisions about treatment, many men prefer to defer decision-making responsibility to their physician. Because the reason has not been explained well, an exploratory study investigated the effect of varying ambiguity and risk and relevant psychological and sociodemographic variables on men's desire for involvement in decision making in a hypothetical treatment scenario. A self-report questionnaire was administered by mail to a community sample of 705 men who were part of an ongoing study into men's health. Measures included the Multidimensional Health Locus of Control scale, the Revised Scale for Ambiguity Tolerance, and the Desire for Involvement Scale. In addition, the men were randomly allocated to four experimental groups for a 2 3 2 manipulation of high and low ambiguity with high and low risk for one of four scenarios for choices of treatment. Varying risk and ambiguity did not affect men's desire for involvement in decision making. Deferral of decision-making responsibility to the physician was predicted by high powerful others (p <.0001), low internal locus of control, a preference for black-and-white thinking, and lower levels of education (p's > .05). The results provided preliminary support for the conceptualization of deferral of decision-making responsibility to the physician as a shortcut-the expert-opinion heuristic.     

Exploring the Impact of Prostate Cancer on Men's Sexual Well-Being

The goal of this research was to better understand the impact of prostate cancer and its treatment on a broad range of aspects of men's sexual well-being. Interviews were conducted with 19 men. The men ranged in age from 49 to 74 years and were 1 to 5 years posttreatment. Our results suggest that some but not all aspects of men's sexual well-being are affected by treatment for prostate cancer. Further, the specific aspects that were affected as well as their emotional impact varied considerably from individual to individual. Most of the men reported that, prior to diagnosis and treatment, they engaged in regular sexual activity and that they had been satisfied or very satisfied with their sexual relationship. Following treatment, most (but not all) of the men reported no change in the amount and type of affection expressed, the quality of their romantic relationship, their self-concept as a man, or their sexual desire. In contrast, nearly all of the men described negative changes that were distressing to them in erections, orgasmic consistency, and sexual satisfaction. Further, most of the men believed that their sex life was over due to their erectile difficulties and so had stopped engaging in any sexual activity with their partner, although one third of them continued to masturbate. Five themes emerged with respect to factors that either contributed to or buffered the emotional impact of these changes: partner responses to changes in sexual functioning, effectiveness of medical treatments, communication with their partner about sexual functioning, acceptance of or resignation to sexual changes, and communication with physicians about sexual functioning. Finally, most participants felt that the health care system did not respond adequately to their needs. These results are discussed with respect to the importance of facilitating sexual communication between partners and between patients and health care providers.     

Men's reflections on participating in cancer rehabilitation: a systematic review of qualitative studies 2000–2013

This paper aims to report on a systematic review of qualitative studies on men's reflections on participating in cancer rehabilitation. Nine databases were systematically searched to identify qualitative papers published between 2000 and 2013. Papers were selected by pre‐defined inclusion criteria and subsequently critically appraised. Key themes were extracted and synthesised. Fifteen papers were selected and represented. Four central themes were identified in the analytical process: ‘changed life perspective’, ‘the masculinity factor’, ‘a desire to get back to normal’ and ‘the meaning of work’. Six peripheral themes were identified: ‘the meaning of context’, ‘music’, ‘physical training’, ‘religion’, ‘humour’ and ‘the unmentionable’. The themes were synthesised into an integrative model representing men's reflections on participating in cancer rehabilitation. We conclude that existing qualitative literature offers insight into men's reflections on cancer rehabilitation and highlights the interrelationship between men's reflections on their changed life perspective, masculinity, orientation towards a normal life and getting back to work. Further research‐based knowledge is needed to explore (1) the underlying causes and patterns of the men's needs, preferences and choices in rehabilitation; and (2) the health professional perspective on male cancer rehabilitation.     

Prostate cancer screening and shared decision-making preferences among African-American members of the Prince Hall Masons

Objectives: Shared decision making (SDM) is recommended as one method to assist men in making an informed decision about prostate cancer screening (PCS). SDM preferences for PCS have not been evaluated among African‐American (AA) men. Given AA men's increased risk and the uncertainty surrounding screening, it is critical to determine how to assist AA men in making an informed decision. We assessed the extent to which a sample of AA men wished to engage in SDM regarding PCS and the demographic and psychological characteristics associated with SDM preferences. Methods: Participants completed a telephone interview that covered demographic and medical information, SDM preferences, PCS knowledge, decisional conflict, and satisfaction with previous screening decisions. Subjects included 286 AA men aged 40–70, who were members of a Masonic organization. Results: Fifty‐seven percent preferred SDM, 36% preferred to make their own decision, and 7% wanted their doctor to decide. A higher level of education and older age were associated with preferring SDM (p<0.05), while men with greater PCS knowledge were more likely to prefer to make the decision independently (p<0.05). Conclusions: Results suggest that physicians need to be prepared to discuss PCS with their patients. Further, more attention may be needed to engage younger, less educated, and less knowledgeable men as they may be less likely to discuss PCS. This understanding of AA men's preferences for PCS decisions helps to clarify the issues that health professionals need to consider when attempting to assist AA men in making a PCS decision. Copyright © 2008 John Wiley & Sons, Ltd.     

Cancer and men from minority ethnic groups: an exploration of the literature

The authors reviewed literature which has been published in the last 20 years. Cancer is the second leading cause of death in developed countries and is expected to become a significant cause of death in developing countries. Whilst there are a large number of studies on cancer and men, there is a paucity of data on men from minority ethnic groups. In the USA, African Americans are more likely to develop cancer than any other ethnic group. Although cancer rates amongst minority ethnic groups in the UK are thought to be low, 11% of Indian and African men and 19% of Caribbean men died from cancer during 1979–1983. There is also further evidence in the USA that African American, Filipinos and Native Americans have the lowest cancer survival rates. Service utilization, especially tertiary care, is also thought to be low amongst minority ethnic groups from the USA and the UK. Reasons for these variations include artefactual, cultural, materialist and social selectivist explanations as well as the effects of migration, racism and genetic disposition. This area is under-researched, in particular cultural beliefs about cancer. Further research into this area should apply culturally competent methods to ensure valid data to inform cancer policy, education and practice.     

Variation in quality of care among older men with localized prostate cancer

BACKGROUND:

The objective of this study was to assess the racial and ethnic disparities in outcomes and their association with process‐of‐care measures for elderly Medicare recipients with localized prostate cancer.

METHODS:

The Surveillance, Epidemiology, and End Results‐Medicare databases for the period from 1995 to 2003 were used to identify African‐American men, non‐Hispanic white men, and Hispanic men with localized prostate cancer, and data were obtained for the 1‐year period before the diagnosis of prostate cancer and up to 8 years postdiagnosis. The short‐term outcomes of interest were complications, emergency room visits, readmissions, and mortality; the long‐term outcomes of interest were prostate cancer‐specific mortality and all‐cause mortality; and process‐of‐care measures of interest were treatment and time to treatment. Cox proportional hazards regression, logistic regression, and Poisson regression were used to study the racial and ethnic disparities in outcomes and their association with process‐of‐care measures.

RESULTS:

Compared with non‐Hispanic white patients, African‐American patients (Hazard ration [HR], 1.43; 95% confidence interval [CE], 1.19‐1.86) and Hispanic patients (HR=1.39; 95% CI, 1.03‐1.84) had greater hazard of long term prostate specific mortality. African‐American patients also had greater odds of emergency room visits (odds ratio, 1.4; 95% CI, 1.2‐1.7) and greater all‐cause mortality (HR, 1.39; 95% CI, 1.3‐1.5) compared with white patients. The time to treatment was longer for African‐American patients and was indicative of a greater hazard of all‐cause, long‐term mortality. Hispanic patients who underwent surgery or received radiation had a greater hazard of long‐term prostate‐specific mortality compared with white patients who received hormone therapy.

CONCLUSIONS:

Racial and ethnic disparities in outcomes were associated with process‐of‐care measures (the type and time to treatment). The current results indicated that there is an opportunity to reduce these disparities by addressing these process‐of‐care measures. Cancer 2011. © 2010 American Cancer Society.     

Connecting humor,health, and masculinities at prostate cancer support groups

Objective: Many commentaries about men's health practices and masculinities indicate that men do not typically engage with self‐health or acknowledge illness, let alone openly discuss their health concerns with other men. Prostate cancer support groups (PCSGs) appear to run contrary to such ideals, yet the factors that influence men's attendance and engagement at group meetings are poorly understood. As part of a larger PCSG study, we noticed that humor was central to many group interactions and this prompted us to examine the connections between humor, health, and masculinities. Methods: A qualitative ethnographic design was used to direct fieldwork and conduct participant observations at the meetings of 16 PCSGs in British Columbia, Canada. Individual semi‐structured interviews were completed with 54 men who attended PCSGs to better understand their perceptions about the use of humor at group meetings. Results: Four themes, disarming stoicism, marking the boundaries, rekindling and reformulating men's sexuality, and when humor goes south were drawn from the analyses. Overall, humor was used to promote inclusiveness, mark the boundaries for providing and receiving mutual help, and develop masculine group norms around men's sexuality. Although there were many benefits to humor there were also some instances when well‐intended banter caused discomfort for attendees. Conclusions: The importance of group leadership was central to preserving the benefits of humor, and the specificities of how humor is used at PCSGs may provide direction for clinical practice and the design of future community‐based men's health promotion programs. Copyright © 2009 John Wiley & Sons, Ltd.