This study explored the experiences of ethnically diverse Black CaP survivors, creating a model that characterizes the positive and negative processes shaping their overall survivorship, thus filling a gap in the existing literature. The resulting theory, “Journeying through Unfamiliar Terrain,” includes three phases and 11 sub-phases that capture the journey through CaP survivorship. Each stage within the model outlines distinct yet interconnected sub-phases, illustrating the evolution and complexities of experiences in navigating the challenges of survivorship.
The first phase, the Discovering Phase, represents a starting point for survivors which begins when men learn about their diagnosis —a distinctive theoretical addition that distinguishes this study from existing studies [32, 33]. In addition, this phase describes the factors that influence awareness, healthcare-seeking behaviors, and cultural perceptions surrounding CaP within Black communities. The model comprehensively describes the moments preceding the confirmation of cancer but also the myriad factors that shape awareness, healthcare-seeking behaviors, and cultural perceptions concerning CaP within Black communities. Within this phase, individuals encountered multifaceted challenges, complexities, and pivotal considerations that set the tone for their entire survivorship journey. This phase also highlighted the importance of awareness and accessibility of information vital for early detection. Further, encouraging dialogue about family medical histories is crucial, considering cultural variations in sharing such information, for example, as reported in some foreign-born participants’ perspectives. Perceptions and attitudes towards CaP within the Black community greatly influence healthcare behaviors, with the stigma surrounding the effects of treatment potentially affecting proactive care-seeking actions [34, 35]. Historical trauma, exemplified by references to slavery, further adds complexity to community reluctance towards specific medical examinations [36–38]. Our study findings also underscore the significance of recognizing the onset of symptoms in CaP and its implications for early detection [39]. Interventions, including education and awareness campaigns, could address misconceptions, stereotypes, and cultural factors influencing fear and stigma. Culturally sensitive approaches and open communication with healthcare providers can also be adopted to promote timely CaP diagnosis, especially in asymptomatic men who have a higher likelihood of being diagnosed with CaP [40].
The Navigating Phase, leading up to a CaP diagnosis, entails emotional, social, and psychological challenges [41, 42]. The emotions reported by individuals post-diagnosis, such as fear, anxiety, and a profound sense of uncertainty, are consistent with findings from other studies [41, 42]. Coping strategies, including spirituality, played a significant role, which was unsurprising as over 88% of participants reported a religious affiliation, finding comfort and guidance through faith and prayer. The critical role of peers, family, and healthcare providers in guiding individuals through their treatment choices is widely documented [43, 44]. Peer support, especially from other CaP survivors, offered valuable shared experiences [45, 46]. In addition, the preference for primary healthcare providers sharing a similar ethnic background among foreign-born participants aligns with research emphasizing racial concordance in patient-provider relationships, which may improve health communication and outcomes [47, 48]. Our study findings highlight ethnic differences in decision-making dynamics, emphasizing the cultural nuances in treatment choices. Familial involvement, especially spousal involvement in treatment decisions, is crucial as it can impact genetic susceptibility and risk assessment within the family [44, 49–52]. Various factors also influenced treatment choices, stressing the importance of personalized care plans and aligning with current medical best practices [53]. Some men faced challenges discussing CaP diagnosis and treatment with family members, possibly due to cultural factors, stigma, or personal preferences. Healthcare providers should offer support and resources to promote open discussion dynamics to ensure that the treatment process is collaborative and supportive for all stakeholders.
Acute and chronic side effects from treatments are major concerns for patients. Sexual dysfunction has been identified as a significant issue impacting QoL [14, 54, 55], which mirrors the concerns most voiced by participants in this study, and it often led to feelings of guilt toward their spouses or partners. The impact of CaP treatment on sexual function not only affected the men themselves but also their intimate relationships. Spouses or partners may experience feelings of frustration, sadness, or disappointment due to the changes in their sexual relationship. The psychosocial impacts of such chronic side effects necessitate comprehensive post-treatment care and support systems [56, 57]. Finally, the anxiety highlighted by men on active surveillance adds to an already growing body of literature on the psychological impact of watching and waiting approaches to cancer treatment [58] and the need for in-depth patient education and psychological support in this delicate period.
The Adapting Phase represents a gradual process where individuals move beyond the immediate effects of CaP diagnosis and treatment. It also involved how participants reshaped their day-to-day lives and coping with the long-term implications of their journey with CaP. Our study also confirms the importance of diverse sources of psychosocial support, a factor extensively acknowledged in the literature for its significance in cancer survivorship [54, 57–60]. For example, spirituality and faith were frequently cited by participants as a critical source of support. This support, acknowledged both directly and indirectly, wasn't always openly deliberated in communal discussions but rather embraced as a personal comfort, highlighting the multidimensional role faith communities play in the lives of cancer survivors [59]. Further, the decision of some participants to seek solace without actively participating in open conversations within faith-based gatherings reflects a nuanced approach to support—the existence of a supportive community might be just as important as direct dialogues about their challenges [60]. The significance of family and peer support parallels findings from the literature [45, 60], which suggests that these social networks provide practical and emotional sustenance, essential in the transition phase post-treatment. In addition, the value placed on peer support reflects convergent dynamics in cancer survivorship experiences, fostering shared experiences that enhance coping strategies [56, 61].
CaP diagnosis fundamentally alters life perspectives, warranting a reevaluation of priorities as described in previous studies [62, 63]. This reevaluation was more poignant among foreign-born men from countries with limited healthcare resources, highlighting global health disparities [64, 65]. The journey of CaP diagnosis and treatment brings forth various physical and emotional changes, necessitating adjustment [66, 67]. Response shift theory explains these psychological adjustments and emphasizes the importance of returning to pre-diagnosis activities to foster a sense of normalcy [68, 69]. Response shift theory is a relevant framework for understanding how individuals cope, reconsider, and reframe their experiences following significant life events, such as a cancer diagnosis [68, 69]. Integrating this theory into clinical practice can, therefore, aid healthcare professionals in providing better support to CaP patients, promoting their adjustment and emotional well-being.
Engaging in advocacy activities instilled a sense of purpose and motivated some men to prioritize their health. Further research is warranted to explore the experiences of men who become advocates and understand the factors contributing to their engagement in advocacy activities. Investigating the pathways and motivations for advocacy can provide valuable insights for developing targeted interventions and support programs to empower men to become advocates for their health and the broader CaP community.
Cancer survivors display a natural progression towards advocacy, a phenomenon observed in other studies [46, 70], where personal experiences with cancers transmute into a deep commitment to community awareness. This transformative process underscores the therapeutic value of helping others as part of the individual’s healing process. Further research is warranted to explore the experiences of men who become advocates and to better understand the factors that lead to engagement in advocacy activities. Investigating the pathways and motivations for advocacy can provide valuable insights for developing targeted interventions and support programs to empower men to become advocates for their health and the broader CaP community.
Managing the fear of recurrence was identified as a vital component of the post-treatment phase, aligning with the complex survivorship model proposed by Koch et al. [71]. While some articulate their anxieties, seeking solidarity and reassurance, others silently navigate this journey. This internally held fear is consistent with the findings from Skaali et al. [72], who reported its prevalence among cancer survivors. The proactiveness of health monitoring post-diagnosis and treatment, like regular PSA screening, mirrors the recommended practices for long-term surveillance in cancer survivorship guidelines [73]. The fear of recurrence also guided treatment decisions among participants. In this study, more than half of the men were diagnosed at early stages (Stage I or II), with radiotherapy emerging as the most common form of treatment [74, 75]. Opting for radiotherapy primarily, these individuals prioritized treatments expected to offer the highest chance of survival in the event of a recurrence. This strategic approach to treatment reflects the enduring impact the fear of recurrence has on the decisions and long-term emotional state of survivors. Healthcare providers must understand these fears to guide treatment discussions and offer comprehensive care that includes psychological support. Addressing such emotional factors is crucial for informed decision-making and could improve adherence to post-treatment care and the overall well-being of survivors.
The use of grounded theory in our study presents both imitations and strengths. A limitation arises from the subjective nature of data collection, analysis, and interpretation inherent in qualitative research, where the researcher’s bias can influence the analysis. Also, we did not include perspectives from spouses and other caregivers, whose experiences may provide additional robustness to the results reported in the study. Given the use of theoretical sampling in this study, a method intrinsic to grounded theory, it is possible that our findings may not be representative of the entire Black CaP survivor population. Theoretical sampling focuses on data richness rather than demographic representativeness, which can limit the generalizability of the results. Participants were also selected based on their potential to inform theory development, so they may not reflect the broader experiences of all BM with CaP, particularly those from different socioeconomic backgrounds, regions, or medical histories. Also, while significant efforts were made, specific culture-specific interpretations and nuances may have been lost in translation. Despite these limitations, the use of grounded theory allowed for constructing a rich, bottom-up understanding of the complex phenomena of interest – experiences of Black CaP survivors. By focusing on the processes and experiences of these men, we unveiled the in-depth perspectives, behaviors, and social processes that might remain obscured under more traditional, quantitative research approaches. This methodology is particularly adept at uncovering the intricate, often personal pathways that Black CaP survivors navigate, providing crucial qualitative insights that can inform more culturally sensitive survivorship care models and targeted interventions.