“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.     

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.     

Pathways to diagnosis for Black men and White men found to have prostate cancer: the PROCESS cohort study

Black men in England have three times the age-adjusted incidence of diagnosed prostate cancer as compared with their White counterparts. This population-based retrospective cohort study is the first UK-based investigation of whether access to diagnostic services underlies the association between race and prostate cancer. Prostate cancer was ascertained using multiple sources including hospital records. Race and factors that may influence prostate cancer diagnosis were assessed by questionnaire and hospital records review. We found that Black men were diagnosed an average of 5.1 years younger as compared with White men (P<0.001). Men of both races were comparable in their knowledge of prostate cancer, in the delays reported before presentation, and in their experience of co-morbidity and symptoms. Black men were more likely to be referred for diagnostic investigation by a hospital department (P=0.013), although general practitioners referred the large majority of men. Prostate-specific antigen levels were comparable at diagnosis, although Black men had higher levels when compared with same-age White men (P<0.001). In conclusion, we found no evidence of Black men having poorer access to diagnostic services. Differences in the run-up to diagnosis are modest and seem insufficient to explain the higher rate of prostate cancer diagnosis in Black men.     

Cancer statistics for African American/Black People 2022

African American/Black individuals have a disproportionate cancer burden, including the highest mortality and the lowest survival of any racial/ethnic group for most cancers. Every 3 years, the American Cancer Society estimates the number of new cancer cases and deaths for Black people in the United States and compiles the most recent data on cancer incidence (herein through 2018), mortality (through 2019), survival, screening, and risk factors using population-based data from the National Cancer Institute and the Centers for Disease Control and Prevention. In 2022, there will be approximately 224,080 new cancer cases and 73,680 cancer deaths among Black people in the United States. During the most recent 5-year period, Black men had a 6% higher incidence rate but 19% higher mortality than White men overall, including an approximately 2-fold higher risk of death from myeloma, stomach cancer, and prostate cancer. The overall cancer mortality disparity is narrowing between Black and White men because of a steeper drop in Black men for lung and prostate cancers. However, the decline in prostate cancer mortality in Black men slowed from 5% annually during 2010 through 2014 to 1.3% during 2015 through 2019, likely reflecting the 5% annual increase in advanced-stage diagnoses since 2012. Black women have an 8% lower incidence rate than White women but a 12% higher mortality; further, mortality rates are 2-fold higher for endometrial cancer and 41% higher for breast cancer despite similar or lower incidence rates. The wide breast cancer disparity reflects both later stage diagnosis (57% localized stage vs 67% in White women) and lower 5-year survival overall (82% vs 92%, respectively) and for every stage of disease (eg, 20% vs 30%, respectively, for distant stage). Breast cancer surpassed lung cancer as the leading cause of cancer death among Black women in 2019. Targeted interventions are needed to reduce stark cancer inequalities in the Black community.     

The experiences of gay and bisexual men diagnosed with prostate cancer: results from an online focus group

Research concerning gay and bisexual men diagnosed with prostate cancer is sparse. An online focus group was conducted over a 4‐week period with participants responding to a range of discussion questions concerning their experiences following a prostate cancer diagnosis. Emerging themes were identified and consensus reached. A summary of each of the themes was produced which the coders agreed conveyed the essence of the online discussion. All men who took part in the online focus group reported that prostate cancer significantly impacted their lives. Unexpectedly, some participants actually gained a positive perspective and adopted a sense of empowerment. Participants spoke about emotional responses to a diagnosis of prostate cancer, accessing help and support, the impact of incontinence, the impact of sexual changes on identity, a re‐evaluation of life, changed sexual relationships, the need to find the most suitable healthcare professionals and identification of current needs to improve quality of care. These areas of disquiet suggest that the psychological impact of this disease may be quite significant over an extended time‐frame. Further research needs to be undertaken to assess the degree of distress accompanying the treatment of gay and bisexual men with prostate cancer.     

‘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.     

Racial differences in medical mistrust among men diagnosed with prostate cancer

BACKGROUND:

Mistrust of healthcare providers and systems is a significant barrier to quality healthcare. However, limited empirical data are available on perceptions of medical mistrust among individuals who are diagnosed with cancer. The objective of this study was to identify sociodemographic, clinical, and cultural determinants of mistrust among men diagnosed with prostate cancer.

METHODS:

The authors conducted an observational study among 196 African‐American men (n = 71) and white men (n = 125) who were newly diagnosed with prostate cancer during 2003 through 2007.

RESULTS:

Race, education, healthcare experiences, and cultural factors had significant effects on mistrust. African‐American men (P = .01) and men who had fewer years of formal education (P = .001) reported significantly greater levels of mistrust compared with white men and men who had more education. Mistrust also was greater among men who had been seeing their healthcare provider for a longer period (P = .01) and among men with lower perceptions of interdependence (P = .01).

CONCLUSIONS:

The current findings suggested that efforts to enhance trust among men who are diagnosed with prostate cancer should target African‐American men, men with fewer socioeconomic resources, and men with lower perceptions of interdependence. Reasons for deterioration in trust associated with greater experience with specialty providers should be explored along with the effects of interventions that are designed to address the concerns of individuals who have greater mistrust. Cancer 2009. © 2009 American Cancer Society.     

Prostate cancer chemoprevention in men of African descent: current state of the art and opportunities for future research

Prostate cancer is the most frequently diagnosed malignancy in men. However, African American/Black men are 60 % more likely to be diagnosed with and 2.4 times more likely to die from prostate cancer, compared to Non-Hispanic White men. Despite the increased burden of this malignancy, no evidence-based recommendation regarding prostate cancer screening exists for the high-risk population. Moreover, in addition to screening and detection, African American men may constitute a prime population for chemoprevention. Early detection and chemoprevention may thus represent an integral part of prostate cancer control in this population. Importantly, recent research has elucidated biological differences in the prostate tumors of African American compared to European American men. The latter may enable a more favorable response in African American men to specific chemopreventive agents that target relevant signal transduction pathways. Based on this evolving evidence, the aims of this review are threefold. First, we aim to summarize the biological differences that were reported in the prostate tumors of African American and European American men. Second, we will review the single- and multi-target chemopreventive agents placing specific emphasis on the pathways implicated in prostate carcinogenesis. And lastly, we will discuss the most promising nutraceutical chemopreventive compounds. Our review underscores the promise of chemoprevention in prostate cancer control, as well as provides justification for further investment in this filed to ultimately reduce prostate cancer morbidity and mortality in this high-risk population of African American men.     

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.     

Recruiting Black/African American men for research on prostate cancer prevention

BACKGROUND: Black/African American men die of prostate cancer at a greater rate relative to other males. During the period from 1992 to 1998, prostate cancer incidence rates in the United States were 234.2 per 100,000 persons among non-Hispanic black males and 144.6 per 100,000 persons among white males. The reasons for these increased rates of prostate cancer among black males are largely unknown, but increased mortality is associated with late detection. The authors conducted a longitudinal study of black men that investigated prostate cancer prevention behaviors within this population. The purpose of the current article is to identify successful recruitment strategies that were reported by participants in this study of prevention behaviors. METHODS: Qualitative research methods were used to elucidate men's thoughts, attitudes, beliefs, and practices regarding prostate cancer prevention behaviors and to identify strategies for attracting black men to research programs and retaining them in these programs. RESULTS: Ethnocentric recruitment strategies that were identified included the development of tailored printed materials; the use of targeted locations; and a personalized, participatory approach for engaging potential participants. We contacted 498 black men and enrolled a cohort of 277 non-Hispanic black males (75% of whom were recruited within a 9-week period) in the current study. CONCLUSIONS: Unlike other studies that reported difficulty in recruiting African American men, the current study did not encounter such difficulties. The authors attribute their success to culturally attractive Afrocentric materials; cultural sensitivity; a caring, professional, personalized ethnic approach; respect; and participatory involvement of the target population. Nonetheless, the authors did encounter barriers, such as lack of physician interest and lack of trust in quality medical care. These barriers must be overcome before black males can be engaged and retained in research studies on prostate cancer prevention.     

Embracing life after prostate cancer. A male perspective on treatment and rehabilitation

This study explores prostate cancer patients' experiences of rehabilitation after radiotherapy with androgen deprivation therapy (ADT). Patients who had completed a multidisciplinary rehabilitation programme with psychosocial support and physiotherapy were interviewed in two focus groups: Group 1 consisted of six men who came to the rehabilitation with their spouses, and Group 2 of seven men who came alone. Meaning condensation was used to analyse the interviews. Radiotherapy was described as full‐time work. Adverse effects due to ADT influencing masculinity and identity were emphasised. The men embraced life with a particular sense of humour. Whether rehabilitation was experienced as useful depended on the health professionals' approach, and on the patients' motivation and effort to contribute to health promotion, and to convert experiences into coping strategies. The supportive role of the spouse was emphasised by several, but some men preferred to handle the process alone. In conclusion, men undergoing ADT should be carefully informed of the consequences. Spousal involvement in rehabilitation must be decided by the patient. The focus group interviews themselves had a positive impact on the men's understanding of their rehabilitation processes. The specific male approach and differences between the needs of female and male cancer patients are important to understand when planning rehabilitation.     

Development of decision‐support intervention for Black women with breast cancer

Background: Adjuvant therapy improves breast cancer survival but is underutilized by Black women. Few interventions have addressed this problem. This preliminary report describes the process we used to develop a decision‐support intervention for Black women eligible for adjuvant therapy. Aims were to use qualitative methods to describe factors that influence Black women's adjuvant therapy decisions, use these formative data to develop messages for a treatment decision‐support intervention, and pilot test the acceptability and utility of the intervention with community members and newly diagnosed women. Methods: Thirty‐four in‐depth interviews were conducted with breast cancer patients in active treatment, survivors and cancer providers to gather qualitative data. Participant ages ranged from 38 to 69 years. A cultural framework was used to analyze the data and to inform intervention messages. Most women relied on their providers for treatment recommendations. Several women reported problems communicating with providers and felt unprepared to ask questions and discuss adjuvant treatment options. Other factors related to treatment experiences were: spiritual coping, collectivism and sharing breast cancer experiences with other Black survivors. Results: Using these formative data, we developed an intervention that is survivor‐based and includes an in‐person session which incorporates sharing personal stories, communication skills training and decision support. Intervention materials were reviewed by community members, researchers/clinicians and patients newly diagnosed with breast cancer. Conclusion: Patients reported satisfaction with the intervention and felt better prepared to talk with providers. The intervention will be tested in a randomized trial to enhance decision support and increase use of indicated adjuvant treatment. Copyright © 2009 John Wiley & Sons Ltd.     

Promoting positive change in the face of adversity: experiences of cancer and post‐traumatic growth

The increasing population of cancer survivors underscores the need to develop a complete understanding of the survivorship experience, including positive aspects. The aim of this study was to explore people's experiences of cancer to assess the relevance of the post‐traumatic growth (PTG) construct and to identify potentially modifiable factors that may promote PTG. Group interviews were conducted with 15 people (eight men, seven women) aged between 36 and 85 who had been diagnosed with cancer and completed treatment. Participants identified that while a cancer diagnosis is a traumatic event and has an immense impact, there is potential for PTG. Participants described examples of positive change within their relationships, perceptions of self and life in general perception, and spirituality. Various modifiable factors were identified as enabling participants to experience growth including social support, finding information, complementary therapy use, lifestyle changes and physical activity. Modifiable factors such as physical activity and searching for information have the potential to influence the development of PTG by providing cancer survivors with an opportunity to regain control. Encouraging and developing research that examines the relationship between modifiable factors and PTG will assist in the development of interventions that address the unique needs of cancer survivors.     

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.     

Breast cancer and age in Black and White women in South East England

Black women have lower age-standardized breast cancer incidence rates than White women in the United Kingdom. However, little is known about such differences in risk in separate age groups. Records on female residents of South East England diagnosed with breast cancer between 1998 and 2003 were extracted from the Thames Cancer Registry database. Age-specific incidence rates were calculated for each 5-year age group using 2001 Census population data for White, Black Caribbean and Black African women. Black Caribbean and Black African breast cancer patients were younger than both the White patients and those with no ethnicity recorded. Black Caribbean and Black African women in the population also had a younger age profile than White women. The computed age-specific incidence rates in women aged under 50 were similar in the different ethnic groups, whereas in women aged 50 and over White women had higher rates. The younger age of Black Caribbean and Black African breast cancer patients in South East England reflects the younger age of these populations, rather than an increased risk of disease at younger ages.     

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.