Keywords

Introduction

Over 1.8 million Americans will be diagnosed and over 600,000 are estimated to die from cancer by the end of 2020, making it the second leading cause of death in the United States [1]. Modern developments in cancer treatment have facilitated increased survival, and there is a growing population of cancer survivors that is expected to reach 18 million within the next decade [2, 3]. Cancer survivors may experience long-term physical and psychosocial effects which extend beyond the treatment phase and which require additional supportive care to cope with these effects and enhance quality of life [1, 4,5,6,7].

In this chapter we will provide a brief overview of the epidemiology of cancer within the US Hispanic population with a specific focus on health disparities experienced by Hispanic men cancer survivors (HMCS). Next, we explore the emerging themes derived from research of the cultural, social, and environmental supportive care needs of HMCS and the coping mechanisms they use. Finally, we propose implications for research and practice for those working with HMCS. In this chapter we will use the terms Hispanic/Latino and Latinx interchangeably. While we recognize the term Latinx has recently emerged, many of the communities we work with still prefer and use the terms Hispanic/Latino.

Epidemiology of Cancer Within the Latinx Population

Overall, Hispanics in the United States experience lower incidence and mortality rates of most cancers compared to other racial and ethnic groups within the nation; however, they experience a significantly higher rate of infection-associated cancers including cervical, liver, and gastrointestinal [1]. It should be noted that the Hispanic population is not homogeneous; cancer incidence, morbidity, mortality rates, and quality of life can vary by a Hispanic person’s country of origin, generational status, and time spent in the United States. For example, US Hispanic men are 85% more likely to die from stomach cancer than non-Hispanic Whites [8]. Additionally, when compared to US non-Hispanic White men, Cuban born men experience higher incidence and mortality rates of prostate cancer, and the incidence of colorectal cancers has been observed to be lower for Hispanics with low socioeconomic status (SES) compared to those with high SES [8,9,10]. Finally, whereas the population of Hispanic cancer survivors is growing, the psychosocial distress experienced by these survivors also varies according to sociocultural factors; more acculturated US Hispanics have reported a lower quality of life than less acculturated Hispanics due in part to a lack of supportive care [10,11,12].

Disparities in Diagnosis and Survivorship

Although US Hispanics experience lower incidence rates of most cancer types, they do suffer from disproportionately high barriers to care access and have lower cancer survival rates when compared to non-Hispanic Whites [11, 13,14,15,16]. For example, 18% of US Hispanics are likely to be uninsured compared to only 5% of non-Hispanic Whites, which can make US Hispanics vulnerable to delayed cancer diagnosis, resulting in more involved, costlier, and potentially less successful treatments [1]. Similarly, Hispanic men and women experience lower rates of cancer-related mortality compared to their non-Hispanic counterparts. However, Hispanic men of all country-of-origin subgroups experience higher incidence rates of all cancer types, except gallbladder cancer, and higher rates of cancer-related mortality compared to Hispanic women [13, 17]. Special attention to the supportive care needs of Hispanic men is required as they are a part of the largest ethnic minority group in the United States and their number of cancer survivors continues to grow [15, 18]. The remainder of this chapter focuses on understanding the supportive care needs of Hispanic men cancer survivors and describes how they cope with cancer. At the end of the chapter, we describe strategies to address these identified needs.

Supportive Care Needs of Hispanic Men Cancer Survivors

Hispanic men report worse cancer-related morbidities including reduced sexual and physical functioning, increased bowel-related issues, decreased quality of life, and worse mental health outcomes compared to their non-White male counterparts [19,20,21,22]. These poor conditions are further complicated by disparities in and access to culturally competent care, health information exchange, and disease management education [4, 19]. Additionally, compared to Hispanic women, Hispanic men who have been diagnosed with cancer may have more psychosocial needs and tend to engage less with supportive care services [23, 24]. Finally, there is a dearth of data and research pertaining to the supportive care needs of HMCS, so the full extent of their needs both during and after cancer treatment is not yet fully understood.

An emerging body of research has sought to capture the unique needs of Hispanic men diagnosed with cancer [10, 14, 15, 25]. We draw on findings from recent research that has sought to explore and understand the needs of HMCS. A detailed description of the mixed methods used is described elsewhere [26,27,28,29]. The overarching themes expressed by HMCS include the needs: for better communication with providers and for culturally competent care; for comprehensive survivorship care and more cancer treatment-related information; to still provide for their family and also navigate changing gender role expectations; and to connect with other cancer survivors.

Need for Better Communication with Providers and for Culturally Competent Care

HMCS discussed the need for culturally competent care; they specifically identified language barriers which inhibit communication relating to care, barriers associated with the use of interpreters, and a lack of confianza (confidence in the personal relationship with the care provider) [28]. HMCS who mentioned language barriers cited a need for bilingual communication of cancer-specific treatment information due in part to a lack of confidence in their English-speaking abilities which inhibited them from asking clarifying questions. Furthermore, even with the use of a bilingual interpreter, some HMCS had reservations about their care as they expressed a lack of confidence that the interpreter was accurately describing their sentiments and concerns. An additional element that surfaced was the importance of having confianza (trust) and personalismo (friendly and personal relationships) with providers, which allows men to build rapport and be able to talk more openly with providers. This affects disclosure of potentially important information about treatment side effect management [28].

Need for Comprehensive Survivorship Care and More Cancer Treatment-Related Information

In addition to cancer recurrence, the major concerns and sources of stress discussed by participants were related to not having enough information about the availability of other treatment options and/or alternative/complimentary medicine, the treatment they received, and the long-term side effects (e.g., impotency, incontinence, and fatigue) [28]. Additionally, many HMCS participants indicated that they lacked understanding of posttreatment care and follow-up, including additional cancer screenings that may need to be done. Many HMCS felt as if the care they received for their cancer should have been more comprehensive and holistic with goals which extended beyond treatment and that were more focused on maintaining overall health and well-being.

Need to Provide for Family While Navigating Changing Gender Role Expectations

HMCS identified impairment of both physical and social aspects of their masculine identities [28]. Common physical complaints centered around impotence and incontinence (potential side effects of prostate cancer treatments), whereas common social complaints identified were the financial and emotional burden placed on female family members due to employment changes or the physical demands of cancer treatments. Both physical and social concerns troubled HMCS because they brought into question their traditional masculine roles in their families, and many HMCS did not feel they were equipped to navigate those expectations.

Need to Connect with Other Cancer Survivors

Finally, HMCS expressed a need to socialize with other HMCS in order to connect and distraerse (to distract themselves) through the discussion of shared experiences in the final emergent needs-based theme [28]. Some HMCS indicated that the only time they had discussed their cancer process with other HMCS was during the interview or focus groups for this study. We observed that participants openly shared their experiences and concerns without inhibition. They expressed a desire to connect with others who had gone through similar experiences.

Data from the S-CaSUN survey (Table 5.1) show that the most highly endorsed items included needs related to comprehensive care/provider communication (46% said yes to their worries about their health being adequately addressed and 45% need to feel their opinion is important to their doctors), information needs and emotional support (42% said they need more information about follow-up care that is needed), and existential survivorship (35% said they need help with their concerns about cancer coming back and knowledge about what to do to stay healthy) [26]. With regards to interpersonal/partner-related issues, 35% said they needed help to deal with the impact that cancer has had on the relationship with their partner.

Table 5.1 Key supportive care needs of Hispanic men cancer survivors taken from the 37 question S-CaSUN survey [26]
Full size table

Coping Mechanisms for Hispanic Men Cancer Survivors

Next, we will describe the coping mechanisms of HMCS in response to their cancer diagnosis, which include maintaining a positive attitude, optimism, humor, faith, incorporation of home remedies into the broader care plan, and lifestyle changes [29]. Having a positive outlook and utilizing optimism and humor were identified as important factors in navigating through a successful care plan after the initial shock of cancer diagnosis. In this way, HMCS felt that the overall attitude was a significant factor in succumbing to or overcoming the disease process. Having faith in God was also observed to be a significant coping mechanism as HMCS perceived their faith to facilitate positive cancer treatment outcomes. Finally, incorporating home remedies and engaging in lifestyle changes, including diet and exercise, were important coping mechanisms for HMCS, as they provided a sense of agency and self-efficacy over their cancer diagnosis and treatment processes. HMCS identified relying on their social support systems, both proximate and distal family members, as an important mechanism to alleviate the feeling of isolation associated with their cancer diagnosis and also as a way to facilitate the physical and logistical demands of attending appointments, receiving treatment, and managing treatment side effects. Similarly, maintaining a positive and supportive relationship between the HMCS and their care provider was identified as an essential coping mechanism because the care provider’s attitude throughout the cancer treatment process carried a significant weight on the HMCS’ positive outlook as it reduced their perceived stress.

Implications for Research and Practice

Innovative public health research and practice is essential for addressing the disparities in supportive care needs experienced by HMCS. This work will require the focused efforts of public health researchers, practitioners, HMCS, Latinx community stakeholders, and care providers in order to identify and implement culturally relevant interventions, which may reduce the illness burden of HMCS. Efforts should center on provision of culturally competent care delivery, transcreation of existing evidence-based interventions to engage and meet the psychosocial needs of HMCS, and the dissemination of research findings to Latinx community members to address the health information needs of HMCS and their families. We also need to develop programs that build on the strengths of the Latino community and facilitate opportunities for HMCS to connect with one another and build their support networks to relieve the burden of isolation frequently experienced by HMCS [30,31,32].

Our findings illustrate the importance of health-care provider communication through listening and building a relationship built on trust with both the HMCS and their families. We also need to address the survivorship care planning needs of HMCS and provide ample health information and psychosocial resources to ease the transition from cancer treatment to survivorship and to enhance quality of life. Finally, public health practitioners in clinical settings should evaluate the role of interpreters in HMCS care as they are pivotal to successful patient-provider communication for both monolingual and bilingual Spanish-speaking patients. We need to ensure that the physical, psychosocial, and supportive care needs of HMCS are adequately addressed.

Conclusion

Although US Hispanics experience lower incidence of most cancer types, cancer remains a leading health burden for the population, particularly for Hispanic men. Additionally, disparities in access to care and delayed diagnoses pose continuing threats to the health of Hispanics in the United States. Furthermore, advances in cancer treatment have facilitated the growth of the HMCS population, which experiences unique supportive care needs and coping styles, many of which remain unaccounted for and unaddressed. We need to build on and recognize community strengths and acknowledge personal agency and coping strategies that will enable HMCS to not only survive but thrive after a cancer diagnosis and treatment.