The hidden costs: a qualitative analysis exploring the experience of prostate cancer treatment-related side effects on sexual function and urinary incontinence among Black survivors and their caregivers

Abstract

Purpose:

Prostate cancer (PCa) disproportionately affects Black men in the U.S., leading to high incidence and mortality rates. Post-treatment challenges, such as sexual dysfunction and urinary incontinence, significantly impact quality of life yet are frequently overlooked. The purpose of this study was to characterize the experience of treatment-related side effects around sexual function and urinary incontinence among Black survivors of PCa and their caregivers.

Methods:

We conducted semi-structured virtual interviews with 11 Black survivors of PCa and 11 caregivers (22 total participants). Survivors were eligible if they were diagnosed and treated for PCa within the last decade and caregivers were eligible if they self-identified as a caregiver for a Black survivor. Interviews were transcribed verbatim and analyzed using a qualitative descriptive approach.

Results:

During interviews, participants spontaneously discussed topics covering sexual dysfunction and urinary incontinence. Key themes identified from interview discussions included the physical experience of PCa treatment, knowledge of the impact of PCa treatment on life quality, and the process of navigating survivorship care. Although they received peer and familial support, survivors expressed a desire for clinicians to initiate discussions on sexual dysfunction and urinary incontinence. Caregivers recounted their experiences while providing support to the survivor.

Conclusions:

The findings underscore the need for clinicians to prioritize discussions on sexual dysfunction and urinary incontinence with patients, and for enhancement of care pathways and resources for these issues in survivorship care.

Implications for cancer survivors:

Trained professionals, such as occupational and physical therapists, social workers, genetic counselors, and psychologists, have the potential to fill this survivorship care gap.

Introduction

Prostate cancer (PCa) is the second most common cancer and the second leading cause of cancer death among men in the US [1]. Significant inequities exist in PCa diagnosis, treatment, and mortality for Black men compared to other racial/ethnic groups [2]. Black men have the highest incidence of PCa compared to other races in the US and have a PCa-specific mortality rate twice as high as white men [3]. Black men are less likely to undergo prostate-specific antigen screening for PCa [4], more likely to be diagnosed with clinically significant or advanced-stage disease, have longer intervals from diagnosis to treatment initiation, and less likely to receive definitive treatment, defined as treatments with “curative” intent, than white men [3, 5]. Black men represent a heterogeneous group of individuals; yet, the experience of racism in the US contributes to the inequitable experience of PCa among racially marginalized populations [6]. Therefore, characterizing the lived experience among Black individuals treated for PCa can help elucidate opportunities to prevent inequities in diagnosis and survival.

Among those who receive definitive treatments for PCa is a significant increase in the prevalence of urinary and sexual dysfunction, including incontinence and erectile dysfunction [7]. Black individuals treated for PCa may be especially susceptible to post-treatment side effects compared to white men [8]. These effects may be exacerbated by the lack of opportunities to seek support within their community networks due to stigma around treatment-related side effects (e.g., erectile dysfunction) [9]. Further, Black patients more often face barriers in communicating with healthcare providers, leading to further isolation and opportunities for misinformation [10]. There is a recognized need for better psychosocial support for all men with PCa—particularly among Black and minoritized men and their caregivers as experiences are complex and intersectional [11].

Intersectional experiences can be observed through navigating dominant cultural norms around masculinity and limited social support around stigmatizing physical experiences (e.g., sexual dysfunction) [12, 13]. Specifically, traditional masculine expectations can lead to delays in seeking care and difficulties in coping with PCa treatment side effects, as acknowledging these issues may be perceived as a threat to masculinity [3, 4]. The intersection of limited social support and pressures of gender theory may exacerbate the challenges Black men face in managing post-treatment side effects and engaging with healthcare providers.

Despite a growing need for post-treatment PCa survivorship care for Black men, several critical questions remain unanswered, such as their lived experiences navigating PCa treatment side effects into survivorship. Addressing these questions is essential for filling gaps in the literature, particularly in understanding and characterizing the lived experiences of Black men navigating the side effects of PCa treatment. This knowledge is crucial for developing effective, culturally relevant survivorship care strategies that improve health outcomes and quality of life for marganalized populations. We aimed to characterize the experience of treatment-related side effects around sexual function and urinary incontinence among Black survivors of PCa and their caregivers.

Methods

The study followed the Consolidated Criteria for Reporting Qualitative Research (COREQ) guidelines to ensure comprehensive and transparent reporting of the methods and findings [14].

We conducted a qualitative sub-analysis of semi-structured interviews of a larger study focused on Black men treated for PCa and their caregivers’ financial costs to characterize the experience of treatment-related side effects. The purpose of this analysis was to characterize the experience of treatment-related side effects around sexual function and urinary incontinence among Black survivors of PCa and their caregivers.

Study setting

This study was conducted at Washington University School of Medicine in St. Louis, MO under the approval of their Institutional Review Board (IRB #202202157).

Study recruitment

Detailed procedures were previously reported [15]. In brief, we recruited PCa survivors who met the following inclusion criteria: (1) English-speaking, (2) self-identified as Black man, (3) diagnosed with PCa within 10 years, and (4) treated with radiation, surgery, or on active surveillance. These treatment types were chosen because of the equipoise in survival outcomes, suggesting an opportunity for a preference-sensitive treatment decision [7, 16, 17]. Caregivers of eligible survivors, defined as care partners, family members, or close friends who provided substantial emotional or practical support, were also eligible to participate. Caregivers were identified and recruited through the same pathways as survivors though they were not matched to the survivors they supported.

Recruitment occurred from October 2022 to May 2023 through two main pathways: (1) a community-based PCa support and advocacy organization and (2) an institutional research participant registry (Washington University in St. Louis Institute of Clinical and Translational Sciences Recruitment Enhancement Core). To recruit eligible individuals, the research team distributed targeted email communications and social media (e.g., Facebook, Twitter) postings via the existing institutional research participant registry. Research staff (H.R.) confirmed the eligibility criteria of potential participants by email or telephone and then scheduled the participant interview. Recruitment continued until the research team reached data saturation, indicating no additional data were being identified in interviews [18,19,20].

Data collection

This study is a sub-analysis of a larger investigation focused on the financial costs of PCa care. For this sub-analysis, our multidisciplinary research team, comprised of experts in public health, epidemiology, and cancer research developed a semi-structured interview guide. The perspectives of the research team were identified and discussed throughout data collection, analysis, and interpretation to acknowledge the reflexivity brought by the research team members.

The interview guide was initially informed by the Measures of Financial Well-being framework [21], aiming to further understand the material (e.g., financial resources and expenses), behavioral (e.g., the process of managing financial resources), and psychosocial (e.g., feelings about financial resources) aspects of participants’ care-related costs. This sub-analysis focused on codes identified inductively in the transcripts.

The research team pilot-tested the interview guide on two members of the community. We used the themes identified from the pilot data (i.e., First Phase Analysis) to inform the Second Phase Analysis by including data describing experiences of treatment-related side effects, particularly sexual and urinary dysfunction.

Full interview guides were published with the parent study [15]. The patient interview guide included open-ended questions designed to elicit participant perspectives on undergoing PCa treatment, direct and indirect costs of care, and how these factors impacted their quality of life and relationships. The guide was adapted as needed to probe deeper into the psychosocial aspects of survivorship. Similarly, the caregiver interview guide included open-ended questions designed to explore their experiences with their loved one’s disease, focusing on emotional and practical challenges. It also sought to capture direct and indirect costs associated with their caregiving role, particularly how these costs influenced their personal lives, relationships, and overall well-being.

Interviews were conducted individually with both survivors and caregivers over Zoom, lasting between 45 and 60 min. We employed a variety of strategies to support virtual interviews, including practicing internally, providing instructions and technical support, and ensuring secure recordings [22]. A research staff member (H.R.) conducted all interviews, with at least one additional research team member present to observe and take notes (A.J.H., A.J.L.). All participants provided informed consent and received a gift card as reimbursement. After the interviews, demographic information was collected verbally, with participants having the option to decline to answer any question. An IRB-approved professional transcription service was used to transcribe each interview recording verbatim.

Data analysis

First phase analysis

The research team followed a qualitative descriptive approach [23,24,25] to analyze interview transcripts. The initial codebook was generated using the semi-structured interview guide based on the Measures of Financial Well-being framework [21]. Two team members (H.R., A.S.) coded the transcripts deductively and inductively [26] and iteratively refined the codebook to capture the material, behavioral, and psychosocial domains related to PCa survivorship. Coders finalized the codebook and research team members (H.R, A.S., A.L., A.J.H.) met frequently to review procedures, resolve any conflicts, and discuss insights identified during coding and analysis.

Second phase analysis

For the sub-analysis described in this paper, the research team used a rapid analysis framework [26] to identify additional topics of sexual and urinary function through inductive analysis, as these codes were identified prominently across interviews. To further explore these topics multi-dimensionally, two team members (I.S., A.J.H.) used an analytic matrix format to analyze three sets of codes: physical effects, knowledge, and procedural. They conducted a thorough content search through all transcripts to identify instances and themes related to sexual and urinary function within and across the coded data.

The coding process was iterative, with team members meeting regularly to review procedures, resolve conflicts, and discuss emerging insights. The codes were then organized into broader topics and overarching themes within the analytic matrix, reflecting the participants’ experiences and study focus on the psychosocial impacts of treatment-related side effects. To enhance reliability, the coding team used a consensus coding approach and met regularly to review the analytic matrix, thematic generation, and triangulation between survivors and caregivers by identifying and synthesizing themes within and across participant types. While guided by the initial codebook, we responded to the dataset by applying an analytical lens of gender and social support theories to further characterize the experience of sexual and urinary function in survivorship [26].

Results

A total of 16 survivors and 21 caregivers were approached. One survivor and 3 caregivers were ineligible, and 4 survivors and 7 caregivers declined or decided not to participate. Eleven Black men who survived PCa (median age = 68 years; IQR 62.0–71.5) and 11 women who were caregivers (median age = 64 years; IQR 58.5–70.5) participated in this study. Most participants were married with a high proportion of those with college and advanced degrees and with higher income (Table 1).

Table 1.

Survivor and caregiver demographic table (N = 22)

	Survivors	Caregivers
	N (%)	N (%)
Current age (years)
40–49		1 (9.1)
50–59	2 (18.2)	3 (27.3)
60–69	4 (36.4)	3 (27.3)
70–79	5 (45.5)	4 (36.4)
Race
Caucasian		1 (9.1)
African American	11 (100)	10 (90.9)
Marital status
Single	2 (18.2)	2 (18.2)
Married	7 (63.6)	6 (54.5)
Divorced	2 (18.2)	1 (9.1)
Widowed		1 (9.1)
Living with significant other		1 (9.1)
Education
Graduated high school or have a GED	1 (9.1)	1 (9.1)
Some college		1 (9.1)
Vocational or trade school	1 (9.1)	1 (9.1)
Associate degree	2 (18.2)	1 (9.1)
Bachelor’s degree	3 (27.3)	2 (18.2)
Graduate or professional degree	4 (36.4)	5 (45.5)
Employment
Regular full time	2 (18.2)	3 (27.3)
Regular part time	1 (9.1)	1 (9.1)
Retired	8 (72.7)	5 (45.5)
Unable to work or disabled		1 (9.1)
Other: business owner		1 (9.1)
Household income
Less than $15,000		1 (9.1)
$15,000–$34,999	1 (9.1)	2 (18.2)
$35,000–$54,999	3 (27.3)
$55,000–$74,999		1 (9.1)
$75,000 or more	6 (54.5)	6 (54.5)
No response	1 (9.1)	1 (9.1)

We identified three descriptive themes: (1) Survivors Moving through Uncertainty, Impermanence, and Loss; (2) Survivors’ and Caregivers’ Physical, Emotional, and Psychosocial Impact; and (3) Survivor and Caregiver Needs: Expectations and Continued Learning about Urinary Incontinence and Sexual Function. The first theme centers the survivor experiences in their own words. The second and third themes triangulate survivor and caregiver perspectives. We have used ellipses in these verbatim quotes to present them succinctly and center the voice of the participants.

Theme 1. Survivors: Moving through Uncertainty, Impermanence, and Loss

When will I get it back?

Exploring the complex emotions of some survivors after prostatectomy highlighted their conflict between the life-saving necessity of surgery and fear of losing sexual function, compounded by age-related concerns. As one survivor expressed,

It was pretty clear that the only path that made sense was to have the prostatectomy in terms of longevity. But there was the fear, not necessarily the expectation, that, okay… just to be blunt, okay, like I’m now going to live a long life, but is sexual activity not going to be part of living a long life? Is being in a relationship off the table? Okay?… and then you have the complexity of just being an old dude on top of all of it.

(Survivor # 3)

Moreover, survivors described adjusting to the temporary nature of urinary incontinence, symbolized by using products like disposable underwear until regaining urinary control. The theme highlights the period of transition and adaptation post-surgery:

‘Cause after the surgery… I didn’t wear underwear. I had to wear… what they call Depends. I had to wear those for a while… until, you know, I could get control of… my continence and stuff…

(Survivor # 1)

Moving through loss

Survivors noted they were surprised by their post-surgery reality, including their experience with the ineffectiveness of sexual function medication and persistent diminished libido. One survivor participant acknowledged the unexpected change in their body and new reality:

… prior to that I tried [erectile dysfunction medications]… and those things wouldn’t-they didn’t work at all for me. That didn’t happen. I still have to manage, uh, through medication and tools, whatever, in order for me to perform… that was the surprise. I guess, I’d say ‘cause my libido was so strong prior to surgery, I’d say, ‘There’s no way this is gonna happen.’ But, hey… the body is what it is. Right?

(Survivor # 6)

Other exemplar quotes can be found in Supplementary Table 1.

Theme 2. Survivor and Caregiver: The Physical, Emotional, and Psychosocial Impact

Feeling not whole in physical intimacy

Survivors contemplated the substantial physical and emotional impact associated with the loss of sexual function. Many expressed feelings of incompleteness and sense of loss profoundly affected their self-identity and quality of life. They described the emotional toll, including feelings of sadness, frustration, and diminished self-esteem. The impact on intimate relationships was particularly significant, as survivors faced difficult decisions regarding the future of their sexual and romantic lives post-prostatectomy. These decisions often involved navigating changes in physical ability. The psychosocial burden extended beyond the individual, affecting caregivers who also had to adapt to these changes, thus highlighting the interconnected emotional challenges within the survivor-caregiver dynamic. One participant shared,

… losing your prostate… you didn’t talk about this, but a cost of not being… [able] to have intercourse, to have sex with… your partner… that’s a cost… trying to go back to trying to make a decision what are you gonna do about, uh, that whole thing about, uh… the whole conversation around sex, you know. It plays a very important part in this mix, this conversation here. You talk about cost. You know, you have to, you have to give up something, you know. And so that’s a cost.

(Survivor # 4)

Logistics of urinary incontinence, loss of control, and embarrassment

Survivors described the unexpected difficulties associated with urinary incontinence. They described the embarrassment and challenges arising from the lack of bodily sensation and necessity of using a catheter, affecting their daily life and routine. One survivor participant shared,

‘Dealing with the bladder. Urination and peeing on yourself when you didn’t know you were peeing. Not being able to really feel the function of your body. So, you know, yeah, just, like I said, just knowing I’m urinating… and couldn’t feel it was kinda weird. It was like, ‘Wow, I didn’t even… I was peeing. You know, right now I am vulnerable, and I can’t control what’s happening down… between my legs. So bottom line, you need to… go [pee]. Otherwise, if I wait… I pee on myself… and I miss the pad or whatever, I’m going home. And I’m not gonna work, uh, with no wet pants. No, I ain’t doing that.’

(Survivor # 8)

Caregivers shared their thoughts on managing daily routine after surgery—which they felt contributed to the survivor’s embarrassment and/or frustration, portraying the emotional toll and impact on their relationships during the healing process. One caregiver participant noted,

And the thing is that after that surgery, you know, you have to wear pull-ups; you have to wear pads because, um, these men… have to get their body back in order. You know, so that’s a struggle… I’m seeing, you know, as they… heal. So that can be embarrassing. That can make them snappy, you know, strike out at people, you know, and people strike out at the people that’s closest to them.

(Caregiver # 5)

Recovery period and its effect on livelihood

Survivors discussed their significant lifestyle changes after receiving treatment. One survivor shared the impact of health issues on their ability to maintain property. They mention selling off property due to an inability to maintain upkeep due to physical limitations following PCa diagnosis:

… I had a lot of property, and I started selling all of that off ‘cause I’m not able to maintain it… I know my lifestyle has changed completely. I have to accept that, but I would like to have some of things that I like to do to be able to do again.

(Survivor # 5)

Additionally, the survivor highlighted challenges related to physical activities, such as walking, and the immediate need to use the bathroom, emphasizing the disruption caused by urinary incontinence. They express a desire to regain aspects of their previous lifestyle, acknowledging the limitations imposed by their health condition.

Well, any… activity. I could… walk… around the house or around the property. And, immediately, I have to run back into the house and use… the bathroom. Any exertion that I have calls for me to have a problem… I can no longer… sit for a long time in any venue, like church or goin’ to a ball game or whatever because of that. My nights is restless.

(Survivor # 5)

In the following quote, the survivor recalled a conversation they had with his union representative to advocate for accommodations related to bathroom breaks due to a medical condition. The survivor drew a parallel between their needs and those of women during their menstrual cycles, emphasizing the necessity for understanding and support. This excerpt highlights an important aspect of masculinity: the struggle against societal norms and expectations. By advocating for himself and his needs in a traditionally masculine environment, the survivor challenged the stereotype that men should silently endure physical discomfort or health issues. The survivor communicates a firm stance, stating he would leave the line if necessary to avoid compromising his health. The survivor also mentions discussing the matter with his union representative, who assures him of support.

Happened to me and why I been gone. And I said… you guys are gonna have to gimme some leeway. ‘Uh, no offense,’ I said, ‘I need the same leeway y’all give those females when they go through their menstrual cycle. I may have to get off the line. If you don’t let me off the line, I will promise you I’ma walk off the line because I am not gonna sit here and mess myself up.’ So… I basically told ‘em, I want the same benefits that the females get… I told my union rep. They said, ‘No problem’. And, you know… didn’t want to really use the female aspect, but… I know most times if you tell another man somethin’, they always think you’re jokin’ and playin’. ‘Man, quit bein’ a sissy.’ You know, I ain’t bein’ no sissy.

(Survivor # 8)

Lastly, in the following quote, a survivor highlighted the significant impact of a surgical procedure on their daily life, particularly emphasizing the challenge of frequent bathroom visits. They revealed how this aspect significantly restricts their activities, particularly mentioning the limitations it imposes on their role as an Uber driver, where quick access to a restroom is essential. The loss of bladder control emerged as a notable issue, and they noted the recommendation to engage in exercises as part of managing this post-surgery concern.

… one of the factors for after you’ve had this surgery is you have to go to the bathroom a lot… you always gotta have… a bathroom handy, someplace close… you could go. So that… kinda limits your activities, uh, especially, like I said… with me bein’ a… Uber driver. I couldn’t stop after every run to… go and pee. And that was… one of the main things… and then the other one was… your bladder, you lose… control of it. So that… became an issue, and they just told me to do the exercises, continue to do the exercises.

(Survivor # 9)

The aftermath of treatment can impact an individual’s ability to carry out daily activities essential for independent living. Treatment-related sequelae can pose challenges to the execution of routine tasks and daily living activities, requiring the individual to navigate and adapt to these changes in their daily life. An example of this can be seen below:

Well, well, I always been pretty active in organizations, and… I had to let that go. Um, and one in particular that I really enjoyed was in my fraternity. Bingo on Thursday, and the fun part of it is dealing with the customers, where there’s a lot of walking involved, so that had to go.

(Survivor #5)

Recognizing the frustration of the survivor’s loss of sexual function

The caregiver’s narrative demonstrates recognition of the survivor’s deep frustration regarding the slow return of sexual function post-surgery. While the caregivers themselves might not share the same level of concern, they empathetically acknowledged the survivor’s frustration and emotional struggle. One survivor sought solace in discussions with friends and family who experienced similar issues post-PCa treatment. In the caregiver’s words,

Um, and his attitude about the slow… change of that and the slow control and the… slow, uh, return of libido. You know, that’s really pissed him off. I mean, it’s really pissed him off. And… that bothers me only because it bothers him ‘cause I told him, ‘I could care less. I don’t care.’

(Caregiver # 1)

Physical change from prostate cancer

The caregiver participant highlighted the PCa-induced physical changes experienced by the survivor. They observed the impact of low libido and the survivor’s discussions with peers who had undergone similar experiences, underscoring the shared emotional and physical challenges faced by survivors’ post-treatment, “You know… low libido and that, he had talked with his other friends and relatives who have been through the process about that.” (Caregiver # 1).

Managing urinary incontinence and related feelings post-surgery

Some caregiver’s descriptions reflect their responsibility of managing the catheter, a task they sometimes did not anticipate. This served as a key responsibility amid post-surgery adjustments, providing insights into the caregiver’s role in aiding the survivor’s recovery. This caregiver elaborated on the survivor’s preference for their assistance:

… havin’ to change that catheter, that was somethin’ I wasn’t expectin’ to have to do. Well, they said he could do it, but he preferred that I do it, but… I didn’t mind, other than he’d like get up early in the mornin’…

(Caregiver # 3)

Other exemplar quotes can be found in Supplementary Table 2.

Theme 3. Survivor and Caregiver Needs: Expectations and Continued Learning about Urinary Incontinence and Sexual Function

Anticipated urinary incontinence

Some caregivers acknowledged the lack of surprise concerning the survivor’s urination and control issues post-surgery. The following quote reflects one caregiver’s anticipation of these challenges, indicating an understanding and preparedness for the survivor’s post-treatment experiences: “… I don’t think anything else was a surprise because I knew that the urination issues and the control issues, you know, were gonna be a problem for him.” (Caregiver # 1).

Catheter learning and complications

Survivors shared their discomfort and initial struggle with the catheter post-surgery—illustrating the challenges associated with adapting to the catheter. Learning to manage the catheter, as well as daily tasks like bathing and using the restroom, can become difficult, outlining the considerable adjustment required post-prostatectomy.

And havin’ a catheter in my penis was not the most pleasant thing to have. That thing there… That was my biggest headache. So that was my biggest, first journey. Then from there, um, learn to deal with the catheter… learnin’ to bathe myself, learnin’ to even use the restroom. I mean… some things just not that easy anymore. I’m like, “Wow, this is kinda difficult.

(Survivor # 8)

Seeking opportunities and learning how to talk about their sexual function

Survivors addressed the need for open communication regarding sexual function, acknowledging the varied experiences and challenges faced by patients in different relationship situations. Specifically, survivors expressed wanting to talk about sexual dysfunction with a provider and waiting for them to initiate conversation. One survivor emphasized his desire for healthcare providers to initiate conversations about sexual function post-prostatectomy,

How do you feel about losing your prostate?… and so it’s not just a question of sexual function whether or not you’re going to have it. It’s going to, it’s also a process… so there’s a conversation. That conversation could be either in prep, someone’s coming to the office who’s a single guy, which is a different conversation from someone’s coming to the office who’s been married for 30 years, and someone, or someone who just started dating. There are all kinds of variables there, and I don’t know that the urologist is going to be the person who’s going to ask that, and I don’t know that the patient is the person who’s going to volunteer that.

(Survivor # 3)

Other exemplar quotes can be found in Supplementary Table 3.

Discussion

This study explored the experiences of Black men treated for PCa and their caregivers, with a particular focus on the impacts of treatment-related side effects, including sexual and urinary function. The findings provide crucial insights into the role of masculinity and social support dynamics in shaping these experiences and highlight the need for culturally relevant interventions.

Our findings underscore the profound influence of masculinity on the experiences of Black men who survived PCa. Traditional masculine ideals, emphasizing self-reliance, emotional restraint, and sexual potency, appeared to significantly impact survivors’ willingness to seek help and discuss treatment-related side effects. Many survivors struggled with the stigma surrounding sexual dysfunction and urinary issues, viewing these side effects as threats, internal and external to their masculinity. Internalized stigma appeared to not only contribute to emotional distress but also led to delays in seeking help and diminished engagement with healthcare providers—aligning with research indicating that internalized and externalized masculine norms can impede help-seeking behaviors and exacerbate the psychological burden of health issues [3, 4].

The study also highlighted the critical role of social support in managing challenges of PCa treatment. Survivors who reported strong support networks—comprising family, friends, and community organizations—generally experienced better coping mechanisms and more positive outcomes. However, those with limited support faced additional difficulties, including isolation and increased distress—aligning with Social Support Theory, which emphasizes that robust social networks can buffer the adverse effects of stress and enhance coping strategies [5, 6]. The stigma associated with PCa-related side effects further complicated support dynamics, as it sometimes led to avoidance of discussions about these issues within support networks.

Implications for clinical practice, research, and policy

The study’s findings have critical implications for clinical practice and policy. They highlight the need for culturally relevant care models that address both the clinical and psychosocial aspects of survivorship. Healthcare providers should integrate discussions about potential side effects into pre-treatment counseling and offer ongoing support to help survivors and caregivers manage these effects. Enhanced education for caregivers, focusing on their role in the care continuum and strategies for providing support, is also essential.

Moreover, the study emphasizes the importance of developing evidence-based interventions tailored to the unique needs of Black men treated for PCa. Such interventions should include resources for managing sexual dysfunction and urinary incontinence and support services to address emotional and psychological challenges. Comprehensive survivorship care plans that incorporate both clinical and quality-of-life considerations are crucial for improving outcomes for survivors and their caregivers.

Implications for future research

Our sub-analysis revealed that sexual and urinary dysfunction were significant concerns for participants. Future research should continue to explore these specific aspects of PCa survivorship in greater depth, examining how cultural and social factors interact with treatment-related side effects.

Strengths and limitations

A strength of our research lies in its focus on the experiences of Black men treated for PCa, an underrepresented group in clinical trial research. While we recruited self-identified Black men treated for PCa, future work can explore the heterogeny of Black PCa survivors and their caregivers to elucidate the variety of experiences within this population. Our study also stands out for the inclusion of caregiving partners of PCa survivors in our analysis. Our analysis reflects the direction of the Commission on Cancer, National Coalition for Cancer Survivorship, and National Cancer Institute inclusion of caregivers in the definition of a survivor and co-partners in the cancer survivorship experience. The study did not assess the sexual or gender minority identities of participants. Our findings may not center on the experience of PCa survivors who identify as sexual or gender minorities, as research indicates differences in the experience of sexual dissatisfaction due to sexual dysfunction for men who have sex with men [27]. As this is a sub-analysis, we did not monitor for thematic saturation related to the post-treatment toll of PCa treatment. Therefore, caution should be taken when applying our findings to other minoritized groups (e.g., racial/ethnic, geographic, low SES). However, our sample size is acceptable because the objective of our analysis was to explore themes identified inductively. We recruited survivors within 10 years of their PCa diagnosis to obtain a contemporary and recent perspective of their survivorship experience. Future work can explore the differences and similarities of survivorship across various time points.

Conclusion

Our findings highlight the unmet need for discussions on sexual dysfunction and urinary incontinence with Black men treated for PCa and caregivers. Further research is needed to develop evidence-based care pathways and resources related to these issues in survivorship care. Professionals trained in managing quality of life and survivorship, such as occupational and physical therapists, social workers, genetic counselors, and psychologists, have the potential to fill this survivorship care gap.

Supplementary Material

Supplementary Information The online version contains supplementary material available at https://doi.org/10.1007/s11764-024-01681-5.

Data Availability

Unable to anonymize qualitative data so not publicly available.