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Original Article

Exploring the Survivorship Experiences and Preferences for Survivorship Care Following Testicular Cancer: A Mixed Methods Study

Petrella, Anika R.a,b; Sabiston, Catherine M.a,∗; O’Rourke, Roxy H.a; Santa Mina, Daniela,c; Matthew, Andrew G.b

Author Information
Journal of Psychosocial Oncology Research and Practice: December 2020 - Volume 2 - Issue 4 - p e038
doi: 10.1097/OR9.0000000000000038
  • Open

Abstract

Introduction

Testicular cancer is the most common cancer diagnosed in young men aged 15 to 39.[1] Given the age at diagnosis, the number of life-years affected by the disease and its curative treatments surpass all other cancer groups.[2] Testicular cancer survivors are an under-studied population of young adult cancer survivors. Of the limited evidence available, it is suggested that these men experience adverse acute and chronic physical and psychosocial health outcomes following treatment, which, when untreated, are reported as unmet care needs.[3–5] There is a growing recognition that young adult cancer survivors require age-appropriate supportive care.[6] Supportive care, by definition, is offered to cancer survivors with the aim of improving quality of life through preventing or treating cancer related side effects and addressing psychosocial challenges.[7] However, conventional adult cancer programming is insufficient in meeting the needs of young people with cancer.[8] To address this gap in care, dedicated and unique survivorship programs that are age-appropriate have been developed, yet engagement from testicular cancer survivors is low.[9]

Lack of engagement in supportive care by testicular cancer survivors may be credited to an absence of tailored programming for men. Poor uptake from men in health promotion research and usual care programming has been well documented.[9,10] It has been suggested that this lack of engagement is due to sex differences in coping with stress, managing health, and engaging in social support and help-seeking behavior.[10,11] Social gender norms may influence the frequency and context that men participate in the giving and receiving of social support, which becomes increasingly important during stressful life events such as cancer.[12,13] For example, maintaining self-reliance and emotional control may thwart engagement in social support and self-care in men.[14] This has yet to be explored with young men, however, older male cancer survivors have reported a reluctance to engage in social support for cancer-related issues.[15] Consequently, sex-sensitized interventions have been developed and implemented that take sex into consideration and promote gendered connections among those men facing similar challenges to increase uptake of services otherwise disparaged.[16–21] There is potential for age and sex appropriate strategies to address poor engagement from testicular cancer survivors in supportive care.

Sport is a sex-sensitized platform by which tailored and targeted health promotion interventions for men have been successfully delivered.[18,22,23] For example, the Football Fans in Training program in the United Kingdom was developed and successfully implemented in middle-aged, overweight men aimed at improving heath behaviors. Leveraging the familiar environment of football clubs, this health and wellness program positively impacted social connectedness, psychological well-being, and physical health.[18,24] The success of this program has been attributed to the strength of each individual program component (community-based physical activity, education on healthy eating and psychological wellbeing, and facilitation of peer-support). Internationally, programs have been successfully developed and tested such as the HAT TRICK program, POWERPLAY, Aussie-FIT, and EuroFIT[20,25–27] and within oncology the FC Prostate Community Trial.[28,29] The accessibility and acceptability of playing sports with other men appear to act as a mechanism in promoting health and wellness among middle aged men, even after treatment for cancer. However, no programs have targeted younger men with cancer. More information is needed to ascertain whether sport-based programs are appropriate for young men with testicular cancer.

Increasing sport participation is also likely to improve health and well-being among men with testicular cancer. Sport is a subtype of physical activity, which has been identified as a safe and effective nonpharmacological intervention used to mitigate the negative impacts of cancer.[30–32] Despite this evidence, and a desire from young people with cancer to be more active,[33] physical activity programs targeting testicular cancer survivors have yet to be developed. Since testicular cancer survivors may be more active than age-matched controls,[34,35] existing motivation could be leveraged to promote engagement in more traditional aspects of supportive care. Using sport as a delivery mechanism could be an accessible and acceptable model for young men, yet an understanding of the preferences and needs of men with testicular cancer is required.

The aim of the present mixed methods study was to explore the survivorship experiences of men with testicular cancer. A second aim was to explore survivors’ attitudes toward the use of sport as a mechanism to deliver supportive care programming, and gain detailed preferences for the delivery, format, and timing of a sport-based program. These findings were intended to inform the development of a tailored intervention for testicular cancer survivors.

Materials and methods

A concurrent mixed methods design, guided by a pragmatic approach, was used whereby qualitative and quantitative data were collected in parallel as 2 distinct phases.[36] The qualitative phase was used to examine the survivorship experience of men with testicular cancer, as well as explore survivors’ perspectives on sport-based programming. In the quantitative phase, men with testicular cancer were surveyed for their preferences for a sport-based supportive care intervention. Data were kept separate and analyzed independently until the interpretation phase using a contiguous approach.[36]

Qualitative phase

Study design and participants

Convenience sampling was used for recruitment of testicular cancer survivors. Survivors were identified as English-speaking men (over the age of 18) who were diagnosed with testicular cancer between the ages of 15 and 39 years (not restricted by stage, time since diagnosis, or treatments received). Interested testicular cancer survivors responded to study advertisements distributed through community survivorship programs and wellness initiatives, as well as through promotion on social media. Survivors contacted the study team directly and were provided with additional study information and screened for eligibility. If eligibility was met and informed consent provided, an individual interview was scheduled in person or over the phone. Recruitment began only after university ethics board approval was obtained. Appropriate sample size was measured by depth of data collected and variability of relevant experiences reported rather than frequencies and therefore recruitment ended once achieved.[37,38] It was estimated a priori that this would occur between 10 and 15 participants based on previous research with young adult cancer survivors[39]; however, this estimated acted as a flexible target.

Specific to philosophical assumption, a relativist ontological position and a subjectivist epistemological position was ascribed to by the current authors.[40] This suggests that socially constructed knowledge and subjective interpretations made by the researchers enable the co-construction of meaning with survivors and give rise to an interpretation of the survivors’ reported experiences and preferences.[41] This approach is conducive to the exploration of areas yet to be defined and supports an analytical framework that encourages the exploration of survivorship experiences and supportive care preferences in this sample of men.[42] Semistructured interview scripts were developed with open-ended exploratory questions to act as a flexible guide to direct the interview process. Testicular cancer survivors were asked about their cancer experience from diagnosis onwards, specifically probing physical and psychosocial challenges (eg, coping with anxiety and mood, fear of recurrence, return to work, body image, exercise or physical activity programming, disclosure of cancer to others). The men's engagement in available supportive care within the hospital or community was also asked (eg, experiences with and perceptions of supportive care within the hospital or community specific to psychosocial challenges named above). In line with previous research on appropriate gender-sensitized programs, a proposed sport-based supportive care model was described in brief (eg, community-based, recreational sport play with other testicular cancer survivors) to all participants who were asked for feedback (eg, what they liked/disliked about a sport-based program, if it interested them, and what could be added to the model to meet their supportive care needs). All semistructured interviews were conducted by 1 member of the research team (AP) either in person or over the phone. The interviewer is a female with 7 years of experience as a psychotherapist working in men's health clinics, as well as previous experience in qualitative data collection and clinical interviewing with testicular cancer survivors. Interviews were audio recorded and transcribed verbatim. All identifiable information was removed from the transcripts to ensure anonymity and confidentiality.

Data analysis

Transcribed interview data were managed using NVivo11TM software. A hybrid approach to data analysis whereby inductive and deductive approaches were used to address the 2 study aims.[42,43] To address the first aim of exploring the survivorship experience of men with testicular cancer, an inductive approach was used following Braun and Clarke's 6-phase approach to thematic analysis.[42] To address the second aim of exploring survivors’ perceptions and preferences for sport-based supportive care programming, a deductive approach was used.

Phase one of inductive analysis[42] began with the interview transcript being read and re-read by AP. In phase 2, an initial set of codes or phrases was identified. For example, themes, such as isolation, were identified and became a data-driven code used onward in the analysis in phase 3. A coding framework was developed in phase 4 and grew with each subsequent interview. In phase 5, a second coder was involved in reading and identifying themes in the interview transcripts (RO) and all themes and codes were discussed among AP, RO, and CMS. Consensus was reached on the final themes through discussion and revisiting the transcripts where necessary. Upon completion of the analysis, AP and RO re-read each interview to ensure that the themes appropriately represented the data, and in consultation with AGM, refined theme titles to best depict data across participating survivors before moving into the final and sixth phase. Deductive analysis of survivors’ feedback was guided by the questions specific to the proposed intervention model and preferences around delivery (hospital or community-based), format (individual, in a group, online support), and timing (frequency, duration).

In line with the philosophical assumptions ascribed to by the current authors (ie, relativist ontology and subjectivist epistemology), the following methods were used to developing rigour and ensuring trustworthiness. A structured interview guide was used that focused on particular areas of interest set a priori which provided direction. Although data may never truly be saturated given that the experiences of individuals are complex,[38] the use of a structured interview guide and inductive approach to data analysis allowed for estimation of data sufficiency and comprehensiveness. This was done so by critical discussion among members of the research team during data collection. Recruitment was closed once no new concepts related to the areas of interest were reported. During the interviews, rapport was built aimed at increasing trustworthiness of the data obtained from participants and field notes were documented by the researcher, which provides additional context to the participants account.[44] In addition, the use of paraphrasing responses from participants for further clarification and discussion was used. Finally, critical discussion among members of the research team as a way of challenging the construction of knowledge and interpretation of the data collected was carried out.[45] These methods were used to support the exploration of multiple and alternative interpretations that may emerge in relation to the data to ensure that a rich, and personally meaningful information from participants was appropriately reported.

Quantitative phase

Study design and participants

Testicular cancer survivors were approached during their routine oncology clinic visits at a principal cancer center in Canada responsible for the care of testicular cancer survivors from across the province. Using nonprobability based sampling methods, survivors who attended one of the 19 urologic cancer clinics attended between April, 2018 and September, 2018 were screened by their treating oncologist for study eligibility, which included: 18 years of age or above; diagnosed with testicular cancer between the ages of 15 and 39 years (not limited by stage, time since diagnosis, or treatments received); and proficient in English. Eligible participants who met criteria and provided informed consent were given the questionnaire to complete. Prior to initiating recruitment, ethics approval for this study was obtained from the cancer center's Research Ethics Board.

Measures

All measures were self-reported and included demographic variables (age, gender, ethnicity, and marital status) and relevant cancer-related variables (date of diagnosis, stage, on or completed treatment, and treatments received/receiving). The Godin Leisure Time Exercise Questionnaire (GLTEQ)[46,47] was used to establish activity levels. Responders were asked to indicate the number of times they engage in mild, moderate, and strenuous physical activity bouts of at least 15 minutes in a typical 7-day period. A Leisure Score Index (LSI) was computed by multiplying the number of bouts at each intensity by 3, 5, and 9 metabolic equivalents and then summed. Respondents were classified into “active" (LSI ≥24) or “insufficiently active" (LSI < 23), which is based on established physical activity guidelines.[48] The GLTEQ has been shown to be a valid and reliable measure of physical activity behavior for cancer survivors.[49–51]

Participants were asked about their physical activity goals (desire to increase, maintain, decrease, or no current goal); whether they had ever discussed physical activity with a medical professional (eg, oncologist, nurse), and whether they were interested in taking part in a physical activity program (yes, no, or maybe). Physical activity program preferences were measured using items modified in part from previous studies.[52,53] Participants were asked to indicate their preference for: frequency of a physical activity program (eg, once a week, twice a week, 3 times a week, >3 times a week, or no preference), day of the week (eg, weekday, weekend, or no preference), time of day (eg, morning, afternoon, evening, or no preference), and duration of sessions (eg, <20 minutes, 20–30 minutes, 30–60 minutes, >60 minutes, or no preference). Preferred timing of offering such an intervention within the disease trajectory was queried (eg, after diagnosis, during treatment, immediately after treatment, 3–6 months after treatment, 1 year after treatment) along with preferred communication modality of available programs (eg, in person, telephone, email, pamphlet handout, online advertisements, or no preference). A matrix of responses examining survivors’ interest in numerous physical activity modalities was used by means of a 3-point Likert scale (ranging from 1 = uninterested, 2 = neither uninterested nor interested, 3 = interested). A second matrix of responses asked survivors how likely they were to participate (ranging from 1 = unlikely to participate, 2 = neither unlikely nor likely, 3 = likely to participate) in a program that had specific location characteristics (eg, at home, at local university/collage, online, hospital based), structures (eg, individual vs group-based, recreational vs competitive, with other survivors), and content (eg, age-, sex-, or cancer-specific). Finally, interest in obtaining information on managing concerns associated with the diagnosis and treatment of cancer[6] was measured as either interested or not at all interested.

Data analysis

Descriptive statistics (means, standard deviations, or frequencies) were calculated using R using summary tools.[54] Descriptive statistics were used to summarize survivors’ characteristics, physical activity behavior and goals, and responses to program preferences. All data were analyzed and no participant was deleted due to missing item-level data.

Results

Qualitative

Eleven testicular cancer survivors (Mage = 32.3, SD = 6.51 years) were interviewed. The sample was predominantly white (92%), married or living with a life partner (55%), and had completed primary treatment within the past 10 years (81% ≥3 years). Nonseminoma tumor was the most common tumor type (55%). The majority of men had undergone an orchiectomy (90%) and ≥1 additional treatments, which included chemotherapy (72.7%), retroperitoneal lymph node dissection (RPLND; 36%), radiotherapy (9%), and stem cell transplant (9%).

Three core themes and 6 subthemes emerged from the inductive analysis of the interviews and were labeled: the developmental disruption (vitality to vulnerability); the connectedness conflict (too proud for pity, isolation, avoidance coping); and the way back to normal (regaining control, breaking down barriers). The themes are presented in Figure 1. Pseudonyms are used to protect the anonymity of the participants. Results from deductive analysis of survivors’ attitudes toward, and preferences for, a sport-based model are presented as feedback. The first 2 themes (developmental disruption and the connectedness conflict) reflect the survivorship experience of men with testicular cancer and the third theme (the way back to normal) and specific feedback represent survivor's attitudes toward a spot-based model.

Figure 1
Figure 1:
Core qualitative themes and subthemes from qualitative phase (N = 11).

The developmental disruption

Age and life stage at time of diagnosis were frequently referenced as a significant factor in the cancer survivorship experience and transcended subsequent themes and subthemes. Cancer was referred to by survivors as an older persons’ disease, which meant that they did not belong. As Andy (38 years of age) described, “When I was in the waiting room, ninety-five percent of people there were older, like let's say sixty and up...I felt like my needs were rather specific, and I don’t think the hospital was geared to address them“. Survivors’ needs were unique to this age group, with cancer having caused a disruption to vocational and personal goals, as well as interfered with social engagements. Testicular cancer survivors are “...either in school or they’re kick-starting their career... there's a set of priorities that you have in say your twenties and thirties that is different than if you’re retired right? Like all of a sudden, you’ve got to put your whole life on hold. Like, it's a harder pill to swallow” (James, 36 years of age).

During this life stage young adults are attempting to gain independence from their families and carve out their own path in life. These attempts reportedly came to an abrupt halt after receiving their diagnosis. As James stated, “I missed my independence” and this loss of autonomy impacted men's career progression, financial independence, and social engagements, subsequently compromising their physical and mental health.

Vitality to vulnerability

Survivors described a rapid transformation from being healthy and full of vigor before cancer, to feeling vulnerable, anxious, and ill as they moved through their cancer journey. As Andy pointed out, “You feel like your body betrayed you by creating the cancer…”. Pre-surgery sperm banking followed by an orchiectomy was often the start of that cancer journey and occurred quickly, with very little time to process this highly distressing experience. As Sam (31 years of age) recalls: “Pre-diagnosis I was very, very active and felt like I was in great health. I was totally floored to find out that I had cancer, because I did not feel unwell at all… I was kind of knocked off my feet for a while”.

Testicular cancer survivors described the impact cancer and its treatments had on their physical and psychosocial health. The most prominent physical challenges pertained to pain, fatigue, and sexual health and fertility. In interpreting the interview data, it was clear that feeling vulnerable and ill following treatment collectively impacted men's physical functioning and emotional coping. Survivors spoke about functional limitations after treatment, however, it was “The outfall afterwards, that was the anxiety and the, the surveillance and follow-ups that took a lot of time, and was very stressful when they came around with the tests.” (Robert, 39 years of age).

Throughout the interviews, survivors’ articulated difficulties managing anxiety and often labeled it as their “...number one” challenge (Robert). As Charlie articulated, “I didn’t really know what to expect” regarding treatment or the transition into survivorship. Survivors classified this challenge as the “fear of the unknown” (Ian, 30 years of age) and specifically “related (it) to fear of recurrence” (Robert). Robert goes on to add “ I think, (fear of recurrence is) a logical fear… you’re scared as hell. And then, you know, in a couple days, I was feeling normal again. I was like, oh, okay, this isn’t this bad, so physically that was fine. But again, the anxiety was overall the major issue. And I hear that time and time again with men on (cancer) forums...It's harder to not have cancer than to have it, because it's the not knowing”. In addition to managing anxiety, survivors expressed body image concerns (eg, weight gain or loss, scars) and expressed difficulties managing mood. For example, Greg (45 years of age) described his moods as being “… up and down like a roller coaster”. Within the data, the need to support survivors in regaining a stable foundation of physical health and emotional coping was clearly present.

The connectedness conflict

Testicular cancer survivors emphasized feeling disconnected from others resulting in a distressing experience of isolation. However, men also placed emphasis on self-reliance, pride, and an aversion to pity. This conflict between subthemes of “Isolation” and both “Too Proud for Pity,” and “Avoidance Coping” is described below.

Isolation

Survivors did not know anyone their age who had faced cancer, let alone testicular cancer. A lack of connectedness to other cancer survivors within the hospital setting was attributed to vast differences in age and life stage. Feeling well supported by friends and family did not eliminate feelings of isolation. As Robert described “…My friends were supportive, my family was supportive, but I also felt like, alone in the experience. Because it's rare. It's a rare disease”.

Isolation was discussed during the time of diagnosis and treatment and appeared to increase as survivors reached the end of their treatment, with men describing a “void that you slip into… a drop off.” (Frank, 32 years of age). The main loss was of the oncology specific support network that they valued during treatment. James summarized this by saying, ”When you’re going through treatment or you’re recovering, everything stops. Interaction stops. The ability to do everything stops”. The only place men knew where to meet other testicular cancer survivors was the hospital waiting room. When conversations arose naturally among survivors at the hospital, high satisfaction was reported; however, these interactions were sparse. Survivors identified this gap and reported a desire to connect with other survivors, as James reported “If I can get any peer-support, however, it’d be great”.

Too proud for pity

Opposing the need for support was the fear of appearing ill, needy, or requiring help. The concept of pride was discussed as a barrier to engagement in supportive care by many survivors. For example, Greg reflected on his experience and stated, “I probably didn’t accept the (supportive care) offers because of that stupid pride thing”. Pride also impacted disclosure to family members, friends, and colleagues, with survivors stating that they did not want to be viewed as the victim. As Robert stated, “Especially if you’re a young man, one of the biggest things, at least for me is, you don’t want to be felt sorry for”. Survivors gave further detail to their reaction to pride and pity and described their proclivity to maintain self-reliance. As Greg articulated, ”I don’t know what it is, I’ve always been strong. I’ve always never needed help from anyone. I never asked people for help. I usually do things on my own. It's that stupid man thing”.

It was evident that survivors were not keen on asking for help, relying on others, or participating in activities involving disclosure, thus men remained unaided. Greg poked fun at the male social norm of the “‘I don’t need help’ crap, reflecting on how men value self-reliance in times of need. Self-reliance was often attributed to discomfort talking about stressful life events, as well as a need for control over one's emotions, such as keeping “…things bottled up.” (James). A desire to protect family members was also touched on, with one survivor stating, in reference to his parents, “…I was supporting them more so than they were supporting me” (Elie, 24 years of age). Survivors spoke about how mothers, in particular, were often present at medical appointments, which was a perceived barrier to asking for help.

As Sam highlighted, evading disclosure was favored; however, when necessary, a desire to control the situation was present: “I do not seek out opportunities to talk about (cancer), or to sort of discuss my experience of my feelings with anyone… If I was going to break the news to someone that I had cancer… I would always preface that with the, I’m going to be fine... Don’t overreact”. It was clear that survivors were trying to keep their pride intact and avoiding sympathy or pity from anyone around them; thus, they chose self-reliance as a protective strategy throughout the cancer journey. This affected all areas of life, including dating and relationships, as James described “I feel kind of embarrassed to be dating again”.

Avoidance coping

It was evident that even when survivorship needs were present, men were not engaging in existing supportive care, nor did they endorse seeking out support. Men described distancing themselves from cancer and being a survivor, avoiding discussing the topic with those around them, and a desire for things to simply go back to normal. Sam stated, “I wanted things to go back to normal, and just move on with my life. Ignore the fact that it was happening as much as possible.” This disengagement further isolated survivors. The struggle to cope and the desire to be healthy again was evident in Robert's statement: “One thing that I was like, trying to convince myself, or outwardly project to people is, I am healthy...Like, yes, I’m going into the hospital, but like, I’m fine…I wouldn’t necessarily disclose to my wife that I had a surveillance appointment at (cancer center), simply because A) I didn’t want her to worry, and B) I don’t want, I didn’t want her to have an image of me as someone that was, was sick.“ It is evident within the data that the conflict between feeling isolated and yet engaging in avoidant coping strategies that are triggered by pride and a dislike of pity or sympathy is its own challenge within the survivorship care pathway.

Attitudes toward sport-based supportive care

The way back to normal

Physical activity was acknowledged by all survivors as a way to work toward getting back on track after testicular cancer. This problem-based approach to coping with their health was described by all survivors as age and sex appropriate and was endorsed by survivors as an avenue for men to address health challenges while accessing social support. Subthemes of “Regaining Control and “Breaking Down Barriers” are described.

Regaining control

Engaging in physical activity (exercise and sport) was viewed as a way by which men could reconnect with one's body and regain a sense of control after cancer. As Andy stated, “When we lose control of our bodies through something like a diagnosis, when our body has failed us … being physically active is one way of trying to take back that control”. Physical activity was thought of as a means to addressing physical health challenges (eg, fatigue, body image), as well as psychosocial challenges (eg, anxiety, low mood). Andy went on to stress the importance of “Trying to feel like we can trust our bodies again… rebuild gradually that mind-body connection. The need to rebuild confidence in one's physical competencies after cancer was emphasized by survivors, which was reflected on as having a positive effect on aspects of mental health and wellness. As Wallace (27 years of age) stated, ”The sport-specific is good for the comradery…It helps with body image, and it helps with confidence." Getting back into physical activity routines also helped to gain “...that sense of stability back in your life” by Elie, and support that “...kind of re-centre” of oneself as Andy described.

Survivors were adamant throughout the interviews that the focus of supportive care should be to “... reinforce we’re a healthy bunch of guys here, celebrating that in a way” (Robert). Cancer was perceived as a part of a much larger picture of overall health, one that needed attention but did not need to be the primary focus. Survivors “...(weren’t) keen on sitting in a group full of guys, sharing stories...” (Frank), yet they expressed an interested in connecting with other survivors, as indicated by Charlie (27 years of age) who said, ”Just having someone else to say hey, this is how my experience was is very beneficial“. Physical activity may provide a platform for a non-cancer focus, while still providing program components that are tailored to meeting the survivorship needs of these men.

Breaking down barriers

Survivors acknowledged needing assistance in managing cancer-related challenges; however, engagement in existing supportive care programming was low. This lack of participation was attributed, in part, to an absence of tailored programming that is both age- and sex-specific. Survivors described general cancer programs as being for older adults, whereas adolescent and young adult programming was perceived to be for childhood survivors. Similarly, survivors commented on how survivorship programs were predominantly attended by women and as Greg indicated, many men are “... uncomfortable talking about (cancer) with young women”. The traditional supportive care model was not of interest to these survivors, with Ian commenting, ”I can’t see a bunch of guys sitting in a circle over coffee just looking at each other in the eyes the whole time." Sport was identified as an alternative to traditional supportive care models by providing a more natural environment for promoting discussion among men who have gone through similar experiences. Engaging in sport with other testicular cancer survivors was appealing, with Cory (26 years of age) reporting that it might be “... easy, maybe to just connect because you know it's only guys going through what you’ve gone through.”

A sport-based supportive care model was described in brief. Participants regarded sport as a fun, engaging model that had to potential to break down some of the barriers to participation in traditional components of supportive care. As Charlie stated, “Sport would be a nice thing to do, and would be fun. The main benefit of it would be putting people in the same area, or same environment…I feel like it just provides better means of access to other people's stories.” Survivors touched on having “... lots of things you have to chat about...” and how “... a community would help after (treatment)” (Ian). Survivors characterized sport as a way to break down barriers of pride and self-reliance, with Charlie stating, “You’re there for a reason, because you all share the same experience…So (sport) helps people approach or breach that subject”. Finally, the locker room was emphasized as an “...effective tool...,” a place for playful banter where men could “…joke, maybe not joke but at least have a chuckle” (Cory).

Feedback

Based on deductive analysis, testicular cancer survivors provided constructive feedback on a sport-based model, along with specific preferences for delivery format. Overall, all survivors (100%) expressed interest in the proposed sport-based intervention model that was initiated after completion of treatment, was group-based, offered outside of the hospital, in the evening (after work) and centered on fun sport play. When preferences for program frequency, duration, and activity modality were queried, survivors turned the question back to the researcher with full respect for evidence-based models. Therefore, no preferences were expressed and a desire for evidence-based programming was articulated. No clear majority was found regarding type of sport, with a broad range of group sports favored. Baseball (46%), soccer (36%), hockey (27%), and basketball (18%) were the most frequently endorsed group sport. Strength training led by a coach with knowledge of cancer was requested by the majority of survivors (82%) to support re-engaging in physical activity. Additional time for socializing after an intervention was also sought after. Throughout the interviews, survivors indicated a preference for psychoeducation to be incorporated within a sport-based program and available online (91%). Information that was trustworthy and tailored to their needs was requested. Specific topics of interest included; managing physical and mental health, fertility, and disclosure of cancer to others. Survivors preferred to be approached in person about available programs. Finally, barriers to engagement were identified, which included competing priorities, cost, and distance to intervention location. To address the barrier of cost, survivors suggested free gym memberships or transportation reimbursements.

Quantitative

A total of 135 testicular cancer survivors (Mage = 32.5, SD = 7.63) completed the questionnaire. Missing data at the item-level were assessed and ranged from complete (n = 135 for descriptive data) to missing up to 28 respondents (n = 107 for preference for timing of intervention variable). Valid percentages are presented. A summary of demographic characteristics can be found in Table 1. Of note, survivors self-reported their sex as male, were predominantly White, married, or living with a life partner, and had been diagnosed with stage I or II disease within the past 3 years. Just >10% of the sample were on active treatment (receiving chemotherapy) at the time of completing the survey.

Table 1
Table 1:
Characteristics of testicular cancer survivors in the quantitative phase (N = 135).

Details of physical activity behavior and beliefs, as well as program delivery and timing preferences, are presented in Table 2. Survivors were considered active, with a desire to increase their current physical activity levels, yet ambivalence about taking part in a physical activity program was observed in over one-third of respondents. Survivors did, however, indicate wanting to hear about available physical activity programming via email (52%). Survivors expressed no clear preference for weekday versus weekend programming but preferred multiple sessions per week (71%), in the evening (47%), lasting 30 to 60 minutes (50%). Commencing a physical activity program was endorsed at all stages of the disease trajectory, with no clear preference.

Table 2
Table 2:
Descriptive statistics for program delivery and timing preferences reported by testicular cancer survivors in quantitative phase (N = 135).

Feedback on physical activity modalities is presented in Table 3. Of note, men showed interest in participating in a wide variety of types of physical activity, with strength training of greatest interest. Preference for program location, structure, and content are presented in Table 4. Survivors were more likely to participate if the program was outside of the hospital setting, involved both individual and group-based activities, and was age-specific. Finally, Figure 2 highlights the percentage of respondents who were interested in obtaining information on common concerns following cancer, specifically fear of recurrence (63%) and future illness (61%) and 40% reported an interest around engaging in physical activity.

Table 3
Table 3:
Descriptive statistics for preferences on physical activity modalities reported by testicular cancer survivors in quantitative phase (N = 135).
Table 4
Table 4:
Descriptive statistics for preferences for program characteristics reported by testicular cancer survivors in quantitative phase (N = 135).
Figure 2
Figure 2:
Preferences for supportive care content reported by testicular cancer survivors in quantitative phase (N = 135).

Discussion

The present study explored the survivorship experience of men diagnosed with testicular cancer and assessed their perceptions and preferences for sport-based supportive care programming. Testicular cancer survivors described the impact cancer had on physical and psychosocial health, emphasized that age and life stage are necessary considerations, and endorsed sport and exercise as a sex-sensitized platform for men to address their physical and psychosocial health. Testicular cancer survivors’ perceptions of sport-based supportive care and preferences for the delivery, format, and timing of a tailored program were also informative. Findings from the qualitative and quantitative phases of this mixed methods study highlight the need for readily available supportive care programs that are tailored to addressing the physical and psychosocial challenges faced by this population.

Qualitative results depict the unique experience of testicular cancer survivors, as well as illustrate their perceptions of, and preferences for, supportive care programming. Consistent with previous reports,[3–5] survivors encountered a number of challenges related to diagnosis and treatment that contributed to physical, psychological, and social difficulties. These difficulties were further complicated by age and life stage, a concept well defined in the AYA literature.[9,55] Survivors spoke about the initial shock of being diagnosed with cancer at this age and the difficult implications. Disruptions to work or school, living situations, as well as social engagements compromised autonomy, self-efficacy, and social connectedness. Irrespective of these challenges, survivors did not seek support, which is consistent with the literature.[10,15,56] Survivors attempted to maintain control over their wavering physical and psychosocial health through their propensity for self-reliance, which involved underreporting needs for support to friends, family members, and medical teams. The impact self-reliance and emotional control had on thwarting engagement in social support and self-care was observed,[14] which was consistent with reports of older male cancer survivors.[15] However, it is important to note that young men may not have the same foundation to rely on at the time of diagnosis compared to older men who may have an established family, circle of friends, and work environment.

Consistent with previous research in psychosocial care,[56] survivors regarded sex as a significant factor in their cancer survivorship experience. Survivors’ touched on sex-based social norms within the context of cancer, specifically identifying a focus on physical performance, pressure to maintain composure and control, avoiding asking for help, and propensity for a more detached coping styles. Men emphasized not wanting to be the victim, nor did they want to be pitied or cared for. This led to a lack of disclosure to others and an ambivalence regarding participating in available supportive care. Sex differences in coping behavior have been noted,[11,57] with evidence that men adopt more avoidant and withdrawal coping strategies for health stressors when they perceive the stressor as uncontrollable. Men have been found to inhibit their emotions more than women and often engage in detached coping styles.[57] Morris et al (2018) reviewed the relationship between coping styles and psychological distress in adult cancer survivors and found that disengagement and distancing oneself from cancer increased psychological distress. Authors stress the importance of supporting survivors in engagement-based coping strategies throughout the cancer care pathway.

Building off existing literature,[18,25] a sport-based model was put forward as a potential gender-sensitized platform to increase engagement from men in supportive care. Sport and exercise were classified as motivating factors for these survivors to participate in available supportive care that was otherwise ignored. Sport was viewed as a fun, sex, and age-appropriate activity that could bring survivors together over a shared interest. This perception is consistent with reports in non-cancer, male populations,[24] suggesting that barriers to participation in traditional models of survivorship care may be overcome through the use of sport-based models. Survivors also endorsed the power of sport and exercise in regaining a sense of control after cancer. This involved rebuilding trust in one's body after the physical betrayal of cancer, which is a theme articulated within the breast cancer literature.[58] The unique survivorship profile described by this sample emphasizes the importance of developing and promoting ongoing supportive care that addresses the physical and psychosocial needs of this population.

Based on the articulated preferences for a sport-based supportive care intervention tailored to testicular cancer survivors, a number of key considerations need to be included in programming. Survivors preferred to engage in programming that was outside of the hospital, which is consistent with previous research in adult survivors[52,53] and adolescent and young adult survivors.[59] Given that the hospital is negatively associated with being ill, supportive programming aimed at rebuilding survivors’ autonomy, self-efficacy, and health should be offered within a community setting. Preferences for programming to be offered in the evening, with individual strength training, group-based fun play, and psychoeducation incorporated throughout that addresses common concerns with age and gender specific content were voiced. Survivors expressed no preference for activity type, other than their desire for guidance on strength training after treatment. Overall, these findings are unique compared to reports outlining adult cancer survivors’ physical activity programming preferences. For example, a recent systematic review cancer survivors preferred exercising in the morning, favored walking as the modality, and were interested in scheduled rather than flexible programming.[60] Consistent with our findings, breast cancer survivors preferred exercises sessions lasting 30 to 60 minutes, using a combination of individual and group-based activities and adopting a flexible structure.[53]

An interest in strength training is consistent with young men's physical activity intervention preferences within the general population, which may be related to traditional and often toxic social norms that idealizing a well-toned muscular physique.[61–63] In addition, men desired competitive sport programming and expressed interest in team sports. Sport has been described as an environment that fosters masculine characteristics[64] and is one of the most common leisure time activities engaged in by men of all ages.[65] Survivors requested that in addition to sport, strength-based exercise training be offered by a trainer who could provide cancer specific guidance. Previous research has highlighted this request for access to trainers who can address survivors’ cancer-related limitations and questions.[59,66] Qualitative data suggest that this desire may come from a lack of knowledge around re-engaging in physical activity after cancer. Quantitative data further supported this interpretation with 70% of respondents expressing interest in taking part in a physical activity program and 40% reporting an interest in information around engaging in physical activity.

Survivors also suggested that psychoeducation be embedded throughout a sport and exercise-based supportive care program. Data support the need for age- and sex-specific content that includes information on managing physical (eg, fertility, sexual health, fatigue, and fertility) and psychosocial (eg, anxiety, depression, body image, and disclosure to others) health after cancer. Supportive care topics identified do not appear to differ from those reported within the general adolescent and young adult literature,[54] suggesting that supportive care content does not need to be tailored to testicular cancer survivors specifically.

This study has a number of strengths and limitations that should be considered when interpreting the results and planning for future research. A major strength of this study was the focus on testicular cancer survivors, who are underrepresented in current cancer literature. Moreover, this study used mixed methods to better understand the experience of testicular cancer survivors and their preferences for supportive care. Such information is instrumental in the future development and design of tailored interventions for testicular cancer survivors. A notable limitation in this study is the likelihood of selection bias due to the transparent purpose of the study in both phases (eg, interviews and survey). Survivors who volunteered for interviews all expressed an existing interest in sport and physical activity and it was noted that 79% of the quantitative sample were considered active. Therefore, testicular cancer survivors who were more interested in physical activity were likely more motivated to participate in this study. The sample was predominantly White and had completed primary treatment; however, there was variability in age, stage, and time since treatment. Therefore, survivorship experiences and program preferences may not reflect those of testicular cancer survivors who are newly diagnosed, on treatment, or differ by demographic factors. Lastly, both phases of this study used nonprobability sampling methods, and measured physical activity using a self-report measure that may be prone to response bias. Furthermore, the preference items were informed by previous work[52,53,59] but have yet to be tested for reliability and validity. Future studies should attempt to recruit larger sample sizes, include an objective measure of physical activity, and more equal representations of survivors from across geographical areas, ages, disease stages, treatments received, and the cancer continuum.

Findings from this study highlight the negative implications of this disease and its treatments on young men as well as the growth process involved in survivorship. These findings appear to align within a post-traumatic growth (PTG) framework that may further identify mechanisms involved in fostering experiences of growth and adaptation.[67] The survivorship profile of testicular cancer survivors presents challenges to providing support; however, our findings indicate that sport may be one way to deliver targeted psychosocial care. Testicular cancer survivors’ shifting identifies could be guided by engagement in sport through the building of character and development of physical competence.[68] One proximal construct to PTG that is integral for this population is social support and sport provides a possible pathway to connect survivors with one another.[67]

In conclusion, findings from this mixed methods study demonstrate that testicular cancer survivors have unique survivorship needs that require tailored supportive care programming. Given the number of life-years affected by this disease and its curative treatments, it is essential that the health and well-being of these young men be supported. Targeting men's physical health through sport and exercise may break down existing barriers to participation in supportive care after testicular cancer and provide an avenue for men to access desired psychosocial support. In designing such an intervention, the perspectives of clinicians involved in the care of testicular cancer survivors, as well as key community-based stakeholders who may facilitate delivery outside of the hospital setting, should be considered.

Conflicts of interest

The authors declare that they have no financial conflict of interest with regard to the content of this report.

Acknowledgements

The authors thank the participants for providing their lived experience of cancer

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Keywords:

exercise; mixed-methods; physical activity; social support; supportive care; testicular cancer

Copyright © 2020 The Authors. Published by Wolters Kluwer Health Inc., on behalf of the International Psycho-Oncology Society.