Fertility preservation needs of men undergoing cancer treatment:  An explorative qualitative study

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Facey, Natalie A. Baker, Anne M. Sorvari, Brittany Speller, and 4 more This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-6559374/v1 This work is licensed under a CC BY 4.0 License Status: Posted Version 1 posted You are reading this latest preprint version Abstract Introduction Developing timely, adequate informational and emotional support to help patients make informed decisions about fertility preservation (FP) is an ongoing challenge. Men undergoing cancer treatment face risks to their fertility which, if not effectively managed, may adversely affect their quality-of-life post-treatment. Research indicates that while they are regularly advised or encouraged to pursue FP, men often receive insufficient information about it. Despite the extensive literature on cancer patient support, the informational needs of men as they relate to FP have been largely unaddressed. Method We used a qualitative secondary analysis of a subset of data from a larger study of clinicians’ perspectives and experiences of FP, as well as women and men’s experiences of cancer and FP, and a thematic analysis approach to answer the question, what are men’s unmet informational and emotional needs related to the FP process and what are the challenges and tensions inherent in meeting them? Findings Participants were 12 men, > 18 who had undergone fertility-threatening cancer treatments for a malignancy within the previous 5 years and who faced onco-fertility decisions before cancer treatments. Men experienced unmet support needs. They received neither enough emotional nor enough informational support to make fully informed decisions, and they experienced FP decisions as directives rather than as informed deliberations. They needed different kinds and amounts of information at different stages of their illness journey. Logistics, physiological and psychological challenges impeded meeting these needs. Conclusions Right sizing FP information in the context of cancer diagnoses continues to be a challenge. This preliminary exploration of the unmet FP needs of men diagnosed with cancer is a useful first step to inform resource development related to counselling men who face threats to their fertility via cancer treatments. Implications Given the potentially negative effects on quality of survivorship when FP issues are not effectively addressed, it is crucial that men’s fertility management go beyond advising the pursuit of FP to provision of resources necessary to do so. These findings can serve as a springboard for further research and discussions of such goals. fertility preservation men’s health cancer survivorship informational needs qualitative research Figures Figure 1 Figure 2 Figure 3 Introduction Men undergoing cancer treatment face risks to their fertility [ 1 – 3 ] and to their emotional well-being as it relates to fertility [ 4 – 7 ]. Infertility management is thus a concern for patients of reproductive age [ 8 ]. Developing timely, adequate informational and emotional supports to help men make informed decisions about fertility preservation (FP) has been an ongoing challenge and concern for patients, healthcare providers and policy makers [ 5 , 9 , 10 ]. Concerns about, and the importance of, cancer survivors’ quality of life are driven partly by increasing rates of survivorship [ 11 – 13 ]. Efforts to avoid or reduce psychological distress, which is already common among cancer patients [ 14 ], and to enhance quality of life after treatment prompted development and implementation of guidelines such as ASCO [ 15 ] and ESMO [ 16 ]. These guidelines along with other research (e.g. Tschudin [ 17 ]) encourage healthcare providers to offer patients timely supports such as information about infertility risks. Nevertheless, inadequate delivery of FP information is consistently reported in studies of cancer and fertility [ 1 , 4 , 10 , 18 – 23 ]. Despite concerns about post-treatment quality of life, uptake of these clinical practice guidelines remains low, with Patel et al. [ 24 ] reporting that only 32% of men had fertility counselling prior to cancer therapy [ 17 , 24 – 26 ]. And, although (with some exceptions, e.g. Ussher & Perz [ 5 ]) research shows that men are more likely than women to be advised to pursue FP [ 20 , 27 – 30 ], men do experience related unmet needs. The perception of male FP as simple or straightforward and thus not in need of detailed discussions [ 31 ] may contribute to inadequate counselling. There is also little information about the types of counselling offered or whether such counselling responds to the specific needs of men at risk of infertility from cancer therapies. This paper addresses this gap in knowledge and understanding. Using data from a larger qualitative research project that examined cancer and FP [ 32 – 36 ], we answer the question, what are men’s unmet informational and emotional needs related to the FP process and what are the challenges and tensions inherent in meeting them. Method We used qualitative secondary analysis [ 37 , 38 ] of a subset of data from a larger study in which we examined men’s and women’s experiences of cancer diagnosis, treatment and decision-making about FP, as well as clinicians’ perspectives and experiences of FP. The goal of the original study was to develop decision aids for patients diagnosed with cancer who were at risk of infertility. We returned to this original data set to explore the specific question of men’s unmet support needs vis-à-vis FP. The findings are reported in compliance with the Consolidated Criteria for Reporting Qualitative Research (COREQ) guideline [ 39 ]. Sampling and data collection : We used purposive and snowball sampling strategies to recruit participants who faced onco-fertility decisions before cancer treatments. Eligibility criteria included participants > age 18 who had undergone fertility-threatening cancer treatments for a malignancy within the previous 5 years. We excluded participants who had cancer recurrence. We aimed for maximum variation in our sample by using multiple recruitment strategies: (i) physicians identified eligible men who were treated in their practices. The initial contact with potential participants was via a standardized invitation letter; (ii) we recruited from nationally known patient advocacy groups such as Wellspring Cancer Support Network, Canadian Cancer Survivor Network, Young Adult Cancer Canada, Wellsprings (Calgary), Lymphoma Canada, Leukemia & Lymphoma Society of Canada, Survive & Thrive, and Cancer Fight Club; and (iii) snowball sampling. A PhD-trained qualitative methodologist conducted semi-structured telephone interviews between 2020 and 2022; these lasted between 45 minutes and 2 hours. We used an interview guide that was pilot-tested and modified iteratively. Topic areas included (i) FP discussions—when they happened, with whom, who initiated, types of information received, and on reflection what was missing; (ii) FP decision-making—nature of fertility referrals/consultations, how much time to decide and types of supports with decision-making. Data Analysis : For this analysis we were concerned, per Thorne’s [ 40 ] assertion, with contributing ‘in some meaningful manner to the body of understanding’ about men’s support needs as they relate to cancer diagnoses and FP. We used a thematic analysis approach and an interpretive perspective [ 41 , 42 ] as a first step to help us organize our thinking about support needs. We discerned two core needs: informational and emotional. In the second stage of analysis, we considered the meanings and implications of these initial findings. Specifically, we considered the nature of the contexts of the men’s experiences and how they contributed to or detracted from getting the supports they needed or desired, i.e. the tensions and challenges of meeting their support needs. Ensuring Rigour To ensure the trustworthiness of the study [ 43 ], the interviews were audio recorded, were transcribed verbatim and the transcripts were audited to ensure accuracy of the transcriptions [ 44 ]. They were read multiple times and detailed summaries of each transcript was written, including memos that described the data and emerging ideas. These summaries/memos were further analysed and distilled into one document, which provided the opportunity for another level of analysis. These summaries/memos formed the basis of discussions with the broader research team. A codebook was used to track ongoing changes in definitions and to explore the multiple interpretations of the codes among the team members [ 42 ]. NVivo data management software Version 12 (QSR International) was used to help organize data and facilitate analysis. The study received ongoing ethics approval from the Research Ethics Board (#18–237). Participants verbally agreed to participate in the study and to be recontacted later if necessary. Findings The final sample included 12 men who experienced onco-fertility choices before cancer treatments. The average age at diagnosis was 31 years. Nine men had testicular cancer and three had lymphoma. Eight had undergone FP at the time of their treatment and four had not (See Table 1 ). The men were on average two years post diagnosis. In the following sections we delineate the unmet needs that the men’s accounts suggested; these span the diagnosis-treatment-survivorship journey (Fig. 1 ). We then describe the challenges or complexities of meeting these needs. Table 1 – Study Participant Characteristics Diagnosis Relationship status at diagnosis Children FP Discussion and/or Referral Who referred/ raised FP Follow through Age at diagnosis P1 17 testicular single 0 Y Surgeon, GP, oncologist Y P2 49 testicular common-law 1 Y* Oncologist Y P3 25 testicular single 0 Y* Mother Y P4 36 testicular married 0 Y Oncologist Y P5 29 Burkitt’s-stage 4 single 0 Y Charge nurse N P6 31 lymphoma single 0 Y Oncologist N P7 37 testicular single 0 Y AYA program director/hcp team N P8 31 testicular married 0 Y Urologist Y P9 34 testicular married 0 Y Urologist/oncologist N P10 29 testicular married 1 Y Urologist and resident Y P11 27 testicular common-law 0 Y Surgeon Y P12 22 lymphoma single 0 Y Haematologist/oncologist Y Average age 31 Y* - Patient initiated conversation Informational support needs Informational support needs refer to the ‘nuts and bolts’ or facts, verbal and written, about FP that cancer patients can draw from to guide their decisions. This includes where and how to access social/emotional resources (e.g., counselling) to help with management of their experiences of cancer and FP. The men’s informational needs were exemplified in the comment of one participant who said, ‘It’s hard when you don’t know what the questions are’, and in another who described the FP process as ‘stressful and uncomfortable’ and like ‘walking down a hallway blindfolded [because] nobody knew how to do it’ (P2a). Although most of the men said they were advised/encouraged to do FP, (‘everybody told me to do it’), they described these discussions as quick and mostly verbal. They described the information they received at the point of diagnosis as ‘scant’, ‘very light’ or ‘bare minimum’. One man said that his discussion about FP with his oncologist ‘wasn’t really a discussion’, other than a comment that chemo was related to infertility and he ‘should really, really, really do it’ to avoid regret later (P1). The men’s accounts suggested they needed different types of information, not necessarily all at once but rather at different points in their diagnosis and treatment processes (See Figs, 1, 2 and Table 2 ). Our analysis suggested that at the point of diagnosis, the specific information the men needed included where and how to do FP. Here, they wanted to know about logistics—clinics and how to access them, clinic processes—wait times, what happens at clinics, (e.g., depositing samples, how many were needed). They also wanted to know how sperm storage worked, for instance length of storage, costs of storage, and financial supports if any. They had questions about sample analyses including genetic risk information, damage done to sperm, possibility of return to normal counts and how long after treatment this would happen. Post-treatment questions included how to access/use cryopreserved sperm, options for conception, relationship between sperm quality/counts and conception options, and statistical information/success rates of different conception methods. Table 2 – Unmet Informational Support Needs Informational Needs Where and how to do fertility preservation (FP) - steps/procedures before banking process - clinic locations Clinic process: what happens at the clinic - private/publicly funded - documents to be completed/informed consent - timing for accessing clinic - aids for sperm production Sample deposit process - no. of samples to deposit, under what conditions - wait times between deposits - ideal times for sperm collection Sperm storage /usage - length of storage - what to do with banked sperm that is not used/not needed - sperm disposal (in cases of death, divorce, sperm counts return to normal) Cost structure for deposits and storage - coverage (insurance, government, out of pocket) - costs for each deposit - costs for storage: once, annually - financial support available (what is covered, who is covered and under what conditions) Genetic risk information - ‘what will I be passing on to my child?’ Cancer and FP - damage done to sperm from chemotherapy - possibility of return to normal counts - how long for return to normalcy Sample analysis - what happens if counts are low - when should samples be analysed, how soon post treatment, how many times - limitations of testing (motility, volume, DNA) - effects of age and disease on sperm count/quality - sperm degradation over time Process for using banked sperm - how to access clinics - how to find health care practitioners to help with fertilization and implantation of embryos Options for conception - how samples affect choice - cut off levels for when different conception methods are used, e.g. ICSI, IVF and IUI - implications of the different methods, pros and cons given individual circumstances (what’s best option for me?) Statistical information - success rates of different methods The written material to which they had access were mostly brochures, however the men said these did not give them an overall sense of ‘how it [FP] all worked’. One man said he did not remember getting any literature on FP but did see ‘a few sentences in a section of my booklet that said fertility can be affected and to avoid trying to conceive within 6 months of chemo’ (P11). Even the men who had followed through with FP said they were still unclear and uncertain about the process. … even the clinic…didn’t really talk to me about it. They just kind of did it, as like a procedure… “here’s the tube, fill it with this, come back, put your name on it and make sure it’s yours so we don’t mix them up”. (P8) Another participant said the clinic where he did FP was not forthcoming with adequate or detailed information and in one instance refused to give him information about his sperm analysis (‘we don’t give it out, doctors have to request it’ (P2)). Notably, although some of the men described FP information as ‘light’ or ‘pretty light’ they also acknowledged they did not always read material they were given. Their accounts suggested experiences of overload, stress, or reluctance to receiving too much information. In some situations, FP information was given concurrently with diagnoses and treatment plans, which they experienced as overwhelming, particularly if they were alone during consultations. Their accounts were also suggestive of the challenges of assimilating the large amounts of information required to make informed decisions about their treatments and FP. One man described the rapid pace at which such details were conveyed during his consultation with care providers. It was like okay, well, we’re going to move as quickly as we can through, what you got, what are the side effects, okay, there’s an option to bank sperm, here are all these people you are about to meet. It was like go, go, go. Within like, less than a day…. I met one of my oncologists and while he was going through all the side effects of chemo, which he said we would start the next day, he did mention the probability of infertility. He may or may not have said you have the option to bank sperm, that I don’t remember…(P7) Emotional support needs The men’s experiences suggested that they wanted both informational and emotional support. (See Table 3 ). While FP was perceived and presented as straightforward (‘just getting a piece of paper and going to the clinic and just doing it’) and though some of the men appeared fairly satisfied with their FP experiences, others expressed dissatisfaction. One man’s account indicated his feelings of being alone and unsupported in his desire to do FP. Table 3 – Unmet Emotional Support Needs Emotional Support Needs General emotional/mental health counselling - post diagnosis/pre-treatment and during FP process - post FP process (e.g., in cases of inability to bank sperm, treatment-related infertility) Institutional support for family/spouses - how can families best support patients - how can families be supported /emotional labour - a navigator: where/how to find/get support - a roadmap: how to manage stress/anxiety/brain fog, feelings of shock, vulnerability and helplessness, how to regain (greater) sense of control - right-sized information (to avoid information overload) Here’s a piece of paper with a phone number essentially, some colourful pamphlets and “figure it out”. And that only gave us one option, I don’t even know if there’s more places you can bank in the City…. Nobody seemed to give a crap , like at the end of the day, it was up to [us] to try to figure out how to do this in a world where we didn’t even know anything about (P2a). They needed this participant said, more than encouragement to ‘just do it’. The men said they wanted or needed counselling/coaching in the immediate post-diagnosis and pre-treatment phases of their illness journey. They also wanted supports to be available long-term—post treatment/survivorship, and they wanted this not just for themselves but also for family/caregivers. As one participant noted, ‘It [diagnosis and FP] broke my wife’. The men’s need for short- and long-term emotional support was exemplified in the comments of one participant who said, ‘You need someone holding your hand through it’. They needed some guidance, a roadmap, ‘someone to come in after the doctor and say okay, now you’ve had the diagnosis here is where we go from here’ (P2). This approach he said could alleviate a lot of stress and anxiety. Emotional supports were crucial because the men experienced their diagnoses, treatment and infertility risks as feelings of shock, uncertainty, powerlessness and vulnerability (e.g., illness and infertility were threats to the masculine self). FP decision-making was experienced as a directed not a deliberative one (‘it wasn’t like the doctor presented it as a question’). It was experienced as physician and family hegemony, (‘I really think you should bank sperm’, ‘the surgeon really pushed, just like pushing me to do it’, and ‘wouldn’t it be nice if we were grandparents’). Decisions about FP were made quickly, without much in-depth consideration or forethought (‘I can’t say there is a decision…There wasn’t any time to ponder what to do, its just a matter of “okay, essentially where’s the closest place to get it done and how do we do it”’ (P2)). The urgency around treatment and FP decision-making was experienced as lack of control. … it felt like a ride… just caught up in this typhoon… kind of banging around… I felt like I was kind of just being strung along by this force of nature that was just pulling me and, I was kinda just going with it, just like, because my, my surgeon recommended [Cancer treatment center] ‘cause that was the best option and I was like “oh okay, I will go with that one”, and my parents kind of suggested that I should look into fertility and get some sperm frozen and I was like “okay, I will do that” and I was, I was in a, I was very suggestable, which probably wasn’t the best place to be…. (P3) The need for short- and long-term emotional supports was also suggested by the men’s expressions of mixed feelings about FP outcomes and by decisional regret, i.e., their decisions were not fully informed, they were constrained choices, or were eclipsed by other considerations (‘I had lots of other things on my mind’). Meeting men’s unmet needs: Challenges and tensions FP outcomes were influenced by factors outside the men’s control— logistics (e.g. time constraints, clinic access, in/outpatient status), nature of diagnosis (e.g. diagnostic uncertainty, elongated diagnostic processes), illness severity (e.g., comorbidities such as edema), and resistance to diagnosis and to FP. Some of the men seemed ambivalent or pained by their FP outcomes. One described his missed opportunity to preserve sperm as ‘rolling the dice’ while others who did FP had insurance or back-up plans. Those unable to bank sperm worried about how infertility might affect their quality of life long-term. Our analysis suggests a tension between the men’s cancer treatment, FP, and informational and emotional support needs. As Fig. 3 illustrates, logistics such as time constraints, which sometimes required coordination between FP clinics and treatment plans, and the nature of the men’s diagnoses influenced the quality and quantity of information they got or whether they got information at all. Illness severity, diagnostic processes, and emotional/psychological loads were also challenges to meeting men’s information needs. Diagnostic uncertainty delayed or precluded FP discussions because physicians perceived it was premature, or they wanted to avoid exacerbating patients’ psychological and emotional distress (‘we are not there yet; I’m not going to give you too much information’). In cases of illness severity, FP was only briefly mentioned or not raised during consultations. Both physicians and patients prioritized treatment (‘the doctors didn’t want to wait, they wanted to start chemo right away’ (P6); ‘because I am super sick and if I [delayed treatment] I probably wouldn’t be around to use it’(P5)). Discussion Through this secondary analysis of qualitative data about men’s experiences of cancer and FP, we begin to make sense of their unmet FP needs. Meeting these needs involves providing answers to questions they may not have anticipated, offering comprehensive information about infertility risks, ways to preserve fertility and options to assess fertility status [ 45 ]. Perceptions of FP as straightforward can hinder meeting men’s support needs. And although predicting the exact effects of cancer treatments on fertility is difficult [ 46 ] and FP can be a complex process [ 22 ], our findings suggest these men needed and wanted detailed information and counselling/emotional support resources. This conclusion is consistent with Ginsberg et al. [ 47 ] who showed that patients want these supports, preferably early in their treatment process. The men experienced FP decisions as physicians’ dictates rather than as informed personal choices. This ‘guidance-cooperation model’ [ 48 ] of doctor-patient communication while on one hand is intended to avoid overwhelming patients with information, it can seem paternalistic and might reduce their sense of control. The latter Arora et al. [ 49 ] and Hong et al. [ 50 ] have argued can affect quality of life. Right-sizing information to avoid overload is challenging—too much or too little or none is equally problematic. Providing detailed information about FP during discussions about diagnosis and treatment may contribute to increased psychological and emotional distress. Information about infertility risks may also be negatively received [ 19 , 25 ]. Logan et al. [ 14 ], reported elevated rates of depression, anxiety and trauma among cancer patients time of diagnoses, which persisted throughout FP discussions and treatments. They recommended integration of FP care into a broader psychological care model for patients. In their systematic review of 61 articles, Klinj et al. [ 23 ] identified three key support resources needs: discussion of infertility risks with patients, consideration of the importance of future fertility, and provision of (verbal and written) patient-specific information. Although Klinj et al. [ 23 ] highlighted the need for more comprehensive information that was tailored to patients’ survivorship stage, they did not specify the types of information, and male survivors were inadequately represented in the samples of the original studies in the review. We expanded on these findings by detailing men’s information and emotional support needs, including FP basics—how to access clinics, how to use preserved sperm, conception options and emotional supports, which are needed at different points in their diagnosis, treatment and survivorship journey. The finding of men’s unmet informational and emotional support needs in the context of cancer and FP contrasts with Benedict’s [ 45 ] finding among female cancer patients who reported that they did not pursue FP due to reasons such as feeling overwhelmed and/or lack of awareness about it. In our study, men were made aware of and were encouraged to preserve their fertility but they received insufficient information about how to do it. Although under-utilization of sperm cryopreservation has been linked to lack of information [ 25 , 51 ], this study shows men underwent FP despite having limited knowledge or understanding of the subject. Strengths and limitations: In this study we analysed secondary qualitative data to examine the unmet support needs of 12 men undergoing cancer treatment and who faced infertility. Participants were chosen based on their capacity to provide rich descriptions about the topics [ 52 ]. Although we achieved informational redundancy, whereby no new information was forthcoming [ 53 , 54 ] the small sample means the findings have limited generalisability to other situations/contexts. We initially theorized that different cancer diagnoses (e.g., lymphoma patients) might have different experiences of FP, different social support needs and that different locations/context (e.g., clinic access, time constraints) might provide different insights into support needs. Further research on these differences and patients’ informational and emotional needs is recommended. The COVID pandemic posed challenges to achieving maximum variation and a larger sample. Nonetheless these findings likely have naturalistic generalisability [ 54 , 55 ] or resonance with readers and their settings. The findings also have analytical generalisability [ 56 ], i.e., conceptualising the men’s unmet needs as social supports, which can be considered social determinants of health for cancer survivors. Our enumeration of these needs offers starting point for thinking about the development of decision-aids and for navigating the FP process. The findings can also serve as a springboard for discussions about resource development such as personalized social supports, champions [ 9 ], patient navigators and FP advanced practice nurses [ 57 ] who can steer men through both their cancer diagnoses/treatment and FP processes. Also, by highlighting situational factors this study highlights the need for further study of potential causes, beyond information gaps, that may contribute to the under utilisation of FP. Conclusion The men’s FP decisions appeared straightforward, but our findings show a complex process. They did not get adequate information to make fully informed decisions and so experienced FP as a directive rather than deliberative process. Their experience left them with unanswered questions and in need of more support and counselling. Balancing patients’ informational needs and well-being remains a challenge. FP conversations need to be individualized and as Klijn et al. [ 23 ] note, clearer FP healthcare pathways need to be developed. A patient-centered approach will ‘optimize FP experiences and help to establish a process to achieve long-term follow up after FP treatment’ [ 23 ]. The unmet needs articulated here are not an exhaustive list. This study serves as starting point for further research into how men facing fertility-threatening cancer treatments (and their families) can be more effectively socially and emotionally supported. In sum, this study highlights the importance of providing patients with opportunities and resources to communicate with care providers within and outside their oncology teams. In North America the development of dedicated resources/programs for adolescent and young adults (AYAs) in oncology are growing. Dedicated advanced practice nurses or social workers who are knowledgeable about treatment and FP procedures can assist patients with decision-making. They can also be helpful with knowledge dissemination, patient comfort and cost recovery advocacy. Declarations Disclosure of competing interests: The authors have no relevant financial or non-financial interests to disclose. Ethics approval: The study received ongoing ethics approval from the hospital’s Research Ethics Board (#18-237). The procedures used in this study adhere to the tenets of the Declaration of Helsinki. Informed consent: Participants verbally agreed to participate in the study and to be recontacted later if necessary. All data are anonymized. Acknowledgements: The authors wish to thank Tari Little for recruitment and coordination of the interviews. We also wish to thank the participants for their time and for sharing their stories with us. Author Contributions: Conceptualisation and methodology: NNB, MEF, LKH, AAG, KAJ Collection and assembly of data: MEF, BS, AMS Formal analysis and interpretation: MEF, NAB Writing – original draft: MEF, NAB Writing – reviewing and editing: NNB, MEF, NAB, LKH, AAG, KAJ Funding acquisition: NNB, LKH, AAG, KAJ Resources: AMS Supervision: NNB Funding: This research was supported by grants from The Canadian Institutes of Health Research (PCG-155445 and FDN-148470). Data availability: Data for this study are (semi-structured) interview transcripts. Reasonable request for access can be made to the hospital’s REB. 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Available: https://www.cancer.gov/types/childhood-cancers/ccss [Accessed 6 June 2024] Logan S, Perz J, Ussher JM, Peate M, Anazodo A (2019) Systematic review of fertility-related psychological distress in cancer patients: Informing on an improved model of care Psychooncology 28: 22–30. 10.1002/pon.4927 Su HI, Lacchetti C, Letourneau J, Partridge AH, Qamar R, Quinn GP, Reinecke J, Smith JF, Jr., Tesch M, Wallace WH, Wang ET, Loren AW (2025) Fertility Preservation in People With Cancer: ASCO Guideline Update J Clin Oncol: Jco2402782. 10.1200/jco-24-02782 Lambertini M, Peccatori FA, Demeestere I, Amant F, Wyns C, Stukenborg JB, Paluch-Shimon S, Halaska MJ, Uzan C, Meissner J, von Wolff M, Anderson RA, Jordan K (2020) Fertility preservation and post-treatment pregnancies in post-pubertal cancer patients: ESMO Clinical Practice Guidelines(†) Ann Oncol 31: 1664–1678. 10.1016/j.annonc.2020.09.006 Tschudin S, Bitzer J (2009) Psychological aspects of fertility preservation in men and women affected by cancer and other life-threatening diseases Hum Reprod Update 15: 587–597. 10.1093/humupd/dmp015 Nahata L, Curci MB, Quinn GP (2018) Exploring Fertility Preservation Intentions Among Transgender Youth J Adolesc Health 62: 123–125. 10.1016/j.jadohealth.2017.11.288 Chapple A, Salinas M, Ziebland S, McPherson A, MacFarlane A (2007) Fertility issues: the perceptions and experiences of young men recently diagnosed and treated for cancer J Adolesc Health 40: 69–75. 10.1016/j.jadohealth.2006.07.010 Yee S, Fuller-Thomson E, Dwyer C, Greenblatt E, Shapiro H (2012) "Just what the doctor ordered": Factors associated with oncology patients' decision to bank sperm Can Urol Assoc J 6: E174-178. 10.5489/cuaj.10084 Dong Y, Yue Z, Zhuang H, Zhang C, Fang Y, Jiang G (2023) The experiences of reproductive concerns in cancer survivors: A systematic review and meta-synthesis of qualitative studies Cancer Med 12: 22224–22251. 10.1002/cam4.6531 Levine J, Canada A, Stern CJ (2010) Fertility preservation in adolescents and young adults with cancer J Clin Oncol 28: 4831–4841. 10.1200/jco.2009.22.8312 Klijn NF, Ter Kuile MM, Lashley E (2023) Patient-Reported Outcomes (PROs) and Patient Experiences in Fertility Preservation: A Systematic Review of the Literature on Adolescents and Young Adults (AYAs) with Cancer Cancers (Basel) 15. 10.3390/cancers15245828 Patel P, Kohn TP, Cohen J, Shiff B, Kohn J, Ramasamy R (2020) Evaluation of Reported Fertility Preservation Counseling Before Chemotherapy Using the Quality Oncology Practice Initiative Survey JAMA Netw Open 3: e2010806. 10.1001/jamanetworkopen.2020.10806 Schover LR, Brey K, Lichtin A, Lipshultz LI, Jeha S (2002) Knowledge and experience regarding cancer, infertility, and sperm banking in younger male survivors J Clin Oncol 20: 1880–1889. 10.1200/jco.2002.07.175 Smith S, Davies S, Wright D, Chapman C, Whiteson M (2007) The experiences of teenagers and young adults with cancer–results of 2004 conference survey Eur J Oncol Nurs 11: 362–368. 10.1016/j.ejon.2006.11.002 Wide A, Wettergren L, Ahlgren J, Smedby KE, Hellman K, Henriksson R, Rodriguez-Wallberg K, Ståhl O, Lampic C (2021) Fertility-related information received by young women and men with cancer - a population-based survey Acta Oncol 60: 976–983. 10.1080/0284186x.2021.1900909 Gelgoot EN, Kruglova K, Chan P, Lo K, Rosberger Z, Chown P, Kazdan J, O'Connell SBL, Zelkowitz P (2022) Evaluation of a Mobile Health App Offering Fertility Information to Male Patients With Cancer: Usability Study JMIR Cancer 8: e33594. 10.2196/33594 Rasouli MA, de Haydu C, Liu AH, Jackman JM, Verma K, Eleswarapu S, Duke CM (2021) Has oncofertility information for male patients improved? Objective assessment of internet-based fertility preservation resources at NCI cancer centers from 2015 to 2020 J Assist Reprod Genet 38: 3057–3060. 10.1007/s10815-021-02302-1 Schover L, Woodard TL (2021) Fertility Preservation Before Cancer Treatment: Aspirations Versus Attainment [Online]. Available: https://dailynews.ascopubs.org/do/fertility-preservation-before-cancer-treatment-aspirations-versus-attainment [Accessed 17 August 2024] Halpern JA, Hill R, Brannigan RE (2020) Guideline based approach to male fertility preservation Urol Oncol 38: 31–35. 10.1016/j.urolonc.2019.02.009 Speller B, Metcalfe K, Kennedy ED, Facey M, Greenblatt E, Scheer AS, Warner E, Joy AA, Wright FC, Baxter NN (2019) The "Begin Exploring Fertility Options, Risks and Expectations" (BEFORE) decision aid: development and alpha testing of a fertility tool for premenopausal breast cancer patients BMC Med Inform Decis Mak 19: 203. 10.1186/s12911-019-0912-y Speller B, Micic S, Daly C, Pi L, Little T, Baxter NN (2019) Oncofertility Decision Support Resources for Women of Reproductive Age: Systematic Review JMIR Cancer 5: e12593. 10.2196/12593 Speller B, Sissons A, Daly C, Facey M, Kennedy E, Metcalfe K, Baxter NN (2019) An evaluation of oncofertility decision support resources among breast cancer patients and health care providers BMC Health Serv Res 19: 101. 10.1186/s12913-019-3901-z Daly C, Micic S, Facey M, Speller B, Yee S, Kennedy ED, Corter AL, Baxter NN (2019) A review of factors affecting patient fertility preservation discussions & decision-making from the perspectives of patients and providers Eur J Cancer Care (Engl) 28: e12945. 10.1111/ecc.12945 Covelli A, Facey M, Kennedy E, Brezden-Masley C, Gupta AA, Greenblatt E, Baxter NN (2019) Clinicians' Perspectives on Barriers to Discussing Infertility and Fertility Preservation With Young Women With Cancer JAMA Netw Open 2: e1914511. 10.1001/jamanetworkopen.2019.14511 Gladstone BM, Volpe T, Boydell KM (2007) Issues encountered in a qualitative secondary analysis of help-seeking in the prodrome to psychosis J Behav Health Serv Res 34: 431–442. 10.1007/s11414-007-9079-x Irwin S (2013) Qualitative secondary data analysis: Ethics, epistemology and context Progress in Development Studies 13: 295–306. 10.1177/1464993413490479 Tong A, Sainsbury P, Craig J (2007) Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups Int J Qual Health Care 19: 349–357. 10.1093/intqhc/mzm042 Thorne S (2020) Beyond theming: Making qualitative studies matter Nurs Inq 27: e12343. 10.1111/nin.12343 Braun V, Clarke V (2006) Using thematic analysis in psychology Qualitative Research in Psychology 3: 77–101. 10.1191/1478088706qp063oa Braun V, Clarke V (2019) Reflecting on reflexive thematic analysis Qualitative Research in Sport, Exercise and Health 11: 589–597. 10.1080/2159676X.2019.1628806 Lincoln YS (1995) Emerging Criteria for Quality in Qualitative and Interpretive Research Qualitative Inquiry 1: 275–289. 10.1177/107780049500100301 Poland BD (1995) Transcription Quality as an Aspect of Rigor in Qualitative Research Qualitative Inquiry 1: 290–310. 10.1177/107780049500100302 Benedict C, Thom B, D NF, Diotallevi D, E MP, N JR, Kelvin JF (2016) Young adult female cancer survivors' unmet information needs and reproductive concerns contribute to decisional conflict regarding posttreatment fertility preservation Cancer 122: 2101–2109. 10.1002/cncr.29917 Loren AW, Mangu PB, Beck LN, Brennan L, Magdalinski AJ, Partridge AH, Quinn G, Wallace WH, Oktay K (2013) Fertility preservation for patients with cancer: American Society of Clinical Oncology clinical practice guideline update J Clin Oncol 31: 2500–2510 10.1200/jco.2013.49.2678 Ginsberg JP, Ogle SK, Tuchman LK, Carlson CA, Reilly MM, Hobbie WL, Rourke M, Zhao H, Meadows AT (2008) Sperm banking for adolescent and young adult cancer patients: sperm quality, patient, and parent perspectives Pediatr Blood Cancer 50: 594–598. 10.1002/pbc.21257 Chipidza FE, Wallwork RS, Stern TA (2015) Impact of the Doctor-Patient Relationship Prim Care Companion CNS Disord 17. 10.4088/PCC.15f01840 Arora NK, Weaver KE, Clayman ML, Oakley-Girvan I, Potosky AL (2009) Physicians' decision-making style and psychosocial outcomes among cancer survivors Patient Educ Couns 77: 404–412. 10.1016/j.pec.2009.10.004 Hong JH, Lachman ME, Charles ST, Chen Y, Wilson CL, Nakamura JS, VanderWeele TJ, Kim ES (2021) The positive influence of sense of control on physical, behavioral, and psychosocial health in older adults: An outcome-wide approach Prev Med 149: 106612 10.1016/j.ypmed.2021.106612 Chung K, Irani J, Knee G, Efymow B, Blasco L, Patrizio P (2004) Sperm cryopreservation for male patients with cancer: an epidemiological analysis at the University of Pennsylvania Eur J Obstet Gynecol Reprod Biol 113 Suppl 1: S7-11. 10.1016/j.ejogrb.2003.11.024 Vasileiou K, Barnett J, Thorpe S, Young T (2018) Characterising and justifying sample size sufficiency in interview-based studies: systematic analysis of qualitative health research over a 15-year period BMC Med Res Methodol 18: 148. 10.1186/s12874-018-0594-7 Roller MR LP (2015) Applied qualitative research design: A total quality framework approach. The Guilford Press, New York, NY, US Lincoln YS, Guba EG (1985) Naturalistic Inquiry. SAGE Publications Stake RE TD (1982) "Naturalistic Generalizations," Review Journal of Philosophy and Social Science: 1–12. Polit DF, Beck CT (2010) Generalization in quantitative and qualitative research: myths and strategies Int J Nurs Stud 47: 1451–1458. 10.1016/j.ijnurstu.2010.06.004 Hendershot E, Maloney AM, Fawcett S, Sarvanantham S, McMahon E, Gupta A, Mitchell L (2016) Advanced practice nurses: Improving access to fertility preservation for oncology patients Can Oncol Nurs J 26: 40–45. 10.5737/236880762614045 Additional Declarations No competing interests reported. Cite Share Download PDF Status: Posted Version 1 posted You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. As a division of Research Square Company, we’re committed to making research communication faster, fairer, and more useful. We do this by developing innovative software and high quality services for the global research community. Our growing team is made up of researchers and industry professionals working together to solve the most critical problems facing scientific publishing. Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-6559374","acceptedTermsAndConditions":true,"allowDirectSubmit":true,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":455490643,"identity":"d23a5494-6aac-4ff9-b30a-bdfbe1d6ea44","order_by":0,"name":"Marcia E. Facey","email":"","orcid":"","institution":"Li Ka Shing Knowledge Institute","correspondingAuthor":false,"prefix":"","firstName":"Marcia","middleName":"E.","lastName":"Facey","suffix":""},{"id":455490644,"identity":"d711bf6b-2bb4-4e90-abe8-3764512553ed","order_by":1,"name":"Natalie A. Baker","email":"","orcid":"","institution":"Li Ka Shing Knowledge Institute","correspondingAuthor":false,"prefix":"","firstName":"Natalie","middleName":"A.","lastName":"Baker","suffix":""},{"id":455490645,"identity":"7ea1e3fc-de22-4757-ab88-132e0bfc851f","order_by":2,"name":"Anne M. Sorvari","email":"","orcid":"","institution":"Li Ka Shing Knowledge Institute","correspondingAuthor":false,"prefix":"","firstName":"Anne","middleName":"M.","lastName":"Sorvari","suffix":""},{"id":455490651,"identity":"5ac22e44-1dad-499c-90c6-b9ae879161e0","order_by":3,"name":"Brittany Speller","email":"","orcid":"","institution":"Li Ka Shing Knowledge Institute","correspondingAuthor":false,"prefix":"","firstName":"Brittany","middleName":"","lastName":"Speller","suffix":""},{"id":455490652,"identity":"986f12f0-24f5-4626-9ab2-d5d17e62b37d","order_by":4,"name":"Keith A. Jarvi","email":"","orcid":"","institution":"Mount Sinai Hospital","correspondingAuthor":false,"prefix":"","firstName":"Keith","middleName":"A.","lastName":"Jarvi","suffix":""},{"id":455490653,"identity":"284d8052-35e3-4308-95ee-4144eb50cc15","order_by":5,"name":"Lisa K. 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Baxter","email":"data:image/png;base64,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","orcid":"","institution":"The University of Sydney","correspondingAuthor":true,"prefix":"","firstName":"Nancy","middleName":"N.","lastName":"Baxter","suffix":""}],"badges":[],"createdAt":"2025-04-29 20:38:10","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-6559374/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-6559374/v1","draftVersion":[],"editorialEvents":[],"editorialNote":"","failedWorkflow":false,"files":[{"id":82758824,"identity":"365e30e8-4a36-4e1c-b61e-ce4ce19fe42f","added_by":"auto","created_at":"2025-05-15 02:23:46","extension":"jpeg","order_by":1,"title":"Figure 1","display":"","copyAsset":false,"role":"figure","size":258103,"visible":true,"origin":"","legend":"\u003cp\u003e\u003cstrong\u003eInformational and emotional needs across the FP-cancer care trajectory\u003c/strong\u003e\u003c/p\u003e","description":"","filename":"floatimage1.jpeg","url":"https://assets-eu.researchsquare.com/files/rs-6559374/v1/51cf9edb6927d9e807828c7f.jpeg"},{"id":82758826,"identity":"959169ad-517e-41a0-9339-9fc00c93e881","added_by":"auto","created_at":"2025-05-15 02:23:46","extension":"jpeg","order_by":2,"title":"Figure 2","display":"","copyAsset":false,"role":"figure","size":807235,"visible":true,"origin":"","legend":"\u003cp\u003e\u003cstrong\u003eSpecific informational needs about the fertility preservation process\u003c/strong\u003e\u003c/p\u003e","description":"","filename":"floatimage2.jpeg","url":"https://assets-eu.researchsquare.com/files/rs-6559374/v1/76ec8153f6adf5dbdd438bd4.jpeg"},{"id":82758829,"identity":"3d8bd2b7-15a1-4cb3-9215-8f32dc3f5184","added_by":"auto","created_at":"2025-05-15 02:23:46","extension":"jpeg","order_by":3,"title":"Figure 3","display":"","copyAsset":false,"role":"figure","size":258018,"visible":true,"origin":"","legend":"\u003cp\u003e\u003cstrong\u003eChallenges/Tensions of meeting men’s unmet needs\u003c/strong\u003e\u003c/p\u003e","description":"","filename":"floatimage3.jpeg","url":"https://assets-eu.researchsquare.com/files/rs-6559374/v1/d797eff38c4c0bc303df4a40.jpeg"},{"id":94474789,"identity":"53c148f3-ad5a-4df6-92de-13d743adf5cb","added_by":"auto","created_at":"2025-10-27 15:50:08","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":2051196,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-6559374/v1/afad72bf-1aeb-4c6d-b629-456fe1715b45.pdf"}],"financialInterests":"No competing interests reported.","formattedTitle":"Fertility preservation needs of men undergoing cancer treatment: An explorative qualitative study","fulltext":[{"header":"Introduction","content":"\u003cp\u003eMen undergoing cancer treatment face risks to their fertility [\u003cspan additionalcitationids=\"CR2\" citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e] and to their emotional well-being as it relates to fertility [\u003cspan additionalcitationids=\"CR5 CR6\" citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e]. Infertility management is thus a concern for patients of reproductive age [\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e]. Developing timely, adequate informational and emotional supports to help men make informed decisions about fertility preservation (FP) has been an ongoing challenge and concern for patients, healthcare providers and policy makers [\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e, \u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e, \u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e]. Concerns about, and the importance of, cancer survivors\u0026rsquo; quality of life are driven partly by increasing rates of survivorship [\u003cspan additionalcitationids=\"CR12\" citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e]. Efforts to avoid or reduce psychological distress, which is already common among cancer patients [\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e], and to enhance quality of life after treatment prompted development and implementation of guidelines such as ASCO [\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e] and ESMO [\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e]. These guidelines along with other research (e.g. Tschudin [\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e]) encourage healthcare providers to offer patients timely supports such as information about infertility risks. Nevertheless, inadequate delivery of FP information is consistently reported in studies of cancer and fertility [\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e, \u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e, \u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e, \u003cspan additionalcitationids=\"CR19 CR20 CR21 CR22\" citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e].\u003c/p\u003e \u003cp\u003e Despite concerns about post-treatment quality of life, uptake of these clinical practice guidelines remains low, with Patel et al. [\u003cspan citationid=\"CR24\" class=\"CitationRef\"\u003e24\u003c/span\u003e] reporting that only 32% of men had fertility counselling prior to cancer therapy [\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e, \u003cspan additionalcitationids=\"CR25\" citationid=\"CR24\" class=\"CitationRef\"\u003e24\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR26\" class=\"CitationRef\"\u003e26\u003c/span\u003e]. And, although (with some exceptions, e.g. Ussher \u0026amp; Perz [\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e]) research shows that men are more likely than women to be advised to pursue FP [\u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e, \u003cspan additionalcitationids=\"CR28 CR29\" citationid=\"CR27\" class=\"CitationRef\"\u003e27\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR30\" class=\"CitationRef\"\u003e30\u003c/span\u003e], men do experience related unmet needs. The perception of male FP as simple or straightforward and thus not in need of detailed discussions [\u003cspan citationid=\"CR31\" class=\"CitationRef\"\u003e31\u003c/span\u003e] may contribute to inadequate counselling. There is also little information about the types of counselling offered or whether such counselling responds to the specific needs of men at risk of infertility from cancer therapies. This paper addresses this gap in knowledge and understanding. Using data from a larger qualitative research project that examined cancer and FP [\u003cspan additionalcitationids=\"CR33 CR34 CR35\" citationid=\"CR32\" class=\"CitationRef\"\u003e32\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR36\" class=\"CitationRef\"\u003e36\u003c/span\u003e], we answer the question, what are men\u0026rsquo;s unmet informational and emotional needs related to the FP process and what are the challenges and tensions inherent in meeting them.\u003c/p\u003e"},{"header":"Method","content":"\u003cp\u003eWe used qualitative secondary analysis [\u003cspan citationid=\"CR37\" class=\"CitationRef\"\u003e37\u003c/span\u003e, \u003cspan citationid=\"CR38\" class=\"CitationRef\"\u003e38\u003c/span\u003e] of a subset of data from a larger study in which we examined men\u0026rsquo;s and women\u0026rsquo;s experiences of cancer diagnosis, treatment and decision-making about FP, as well as clinicians\u0026rsquo; perspectives and experiences of FP. The goal of the original study was to develop decision aids for patients diagnosed with cancer who were at risk of infertility. We returned to this original data set to explore the specific question of men\u0026rsquo;s unmet support needs vis-\u0026agrave;-vis FP. The findings are reported in compliance with the Consolidated Criteria for Reporting Qualitative Research (COREQ) guideline [\u003cspan citationid=\"CR39\" class=\"CitationRef\"\u003e39\u003c/span\u003e].\u003c/p\u003e \u003cp\u003e\u003cem\u003eSampling and data collection\u003c/em\u003e: We used purposive and snowball sampling strategies to recruit participants who faced onco-fertility decisions before cancer treatments. Eligibility criteria included participants\u0026thinsp;\u0026gt;\u0026thinsp;age 18 who had undergone fertility-threatening cancer treatments for a malignancy within the previous 5 years. We excluded participants who had cancer recurrence. We aimed for maximum variation in our sample by using multiple recruitment strategies: (i) physicians identified eligible men who were treated in their practices. The initial contact with potential participants was via a standardized invitation letter; (ii) we recruited from nationally known patient advocacy groups such as Wellspring Cancer Support Network, Canadian Cancer Survivor Network, Young Adult Cancer Canada, Wellsprings (Calgary), Lymphoma Canada, Leukemia \u0026amp; Lymphoma Society of Canada, Survive \u0026amp; Thrive, and Cancer Fight Club; and (iii) snowball sampling.\u003c/p\u003e \u003cp\u003eA PhD-trained qualitative methodologist conducted semi-structured telephone interviews between 2020 and 2022; these lasted between 45 minutes and 2 hours. We used an interview guide that was pilot-tested and modified iteratively. Topic areas included (i) FP discussions\u0026mdash;when they happened, with whom, who initiated, types of information received, and on reflection what was missing; (ii) FP decision-making\u0026mdash;nature of fertility referrals/consultations, how much time to decide and types of supports with decision-making.\u003c/p\u003e \u003cp\u003e \u003cem\u003eData Analysis\u003c/em\u003e: For this analysis we were concerned, per Thorne\u0026rsquo;s [\u003cspan citationid=\"CR40\" class=\"CitationRef\"\u003e40\u003c/span\u003e] assertion, with contributing \u0026lsquo;in some meaningful manner to the body of understanding\u0026rsquo; about men\u0026rsquo;s support needs as they relate to cancer diagnoses and FP. We used a thematic analysis approach and an interpretive perspective [\u003cspan citationid=\"CR41\" class=\"CitationRef\"\u003e41\u003c/span\u003e, \u003cspan citationid=\"CR42\" class=\"CitationRef\"\u003e42\u003c/span\u003e] as a first step to help us organize our thinking about support needs. We discerned two core needs: informational and emotional. In the second stage of analysis, we considered the meanings and implications of these initial findings. Specifically, we considered the nature of the contexts of the men\u0026rsquo;s experiences and how they contributed to or detracted from getting the supports they needed or desired, i.e. the tensions and challenges of meeting their support needs.\u003c/p\u003e \u003cp\u003e \u003cstrong\u003eEnsuring Rigour\u003c/strong\u003e \u003cp\u003eTo ensure the trustworthiness of the study [\u003cspan citationid=\"CR43\" class=\"CitationRef\"\u003e43\u003c/span\u003e], the interviews were audio recorded, were transcribed verbatim and the transcripts were audited to ensure accuracy of the transcriptions [\u003cspan citationid=\"CR44\" class=\"CitationRef\"\u003e44\u003c/span\u003e]. They were read multiple times and detailed summaries of each transcript was written, including memos that described the data and emerging ideas. These summaries/memos were further analysed and distilled into one document, which provided the opportunity for another level of analysis. These summaries/memos formed the basis of discussions with the broader research team. A codebook was used to track ongoing changes in definitions and to explore the multiple interpretations of the codes among the team members [\u003cspan citationid=\"CR42\" class=\"CitationRef\"\u003e42\u003c/span\u003e]. NVivo data management software Version 12 (QSR International) was used to help organize data and facilitate analysis. The study received ongoing ethics approval from the Research Ethics Board (#18\u0026ndash;237). Participants verbally agreed to participate in the study and to be recontacted later if necessary.\u003c/p\u003e \u003c/p\u003e"},{"header":"Findings","content":" \u003cdiv id=\"Sec3\" class=\"Section2\"\u003e \u003cp\u003eThe final sample included 12 men who experienced onco-fertility choices before cancer treatments. The average age at diagnosis was 31 years. Nine men had testicular cancer and three had lymphoma. Eight had undergone FP at the time of their treatment and four had not (See Table\u0026nbsp;\u003cspan refid=\"Tab1\" class=\"InternalRef\"\u003e1\u003c/span\u003e). The men were on average two years post diagnosis. In the following sections we delineate the unmet needs that the men\u0026rsquo;s accounts suggested; these span the diagnosis-treatment-survivorship journey (Fig.\u0026nbsp;\u003cspan refid=\"Fig1\" class=\"InternalRef\"\u003e1\u003c/span\u003e). We then describe the challenges or complexities of meeting these needs.\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab1\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 1\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003e\u0026ndash; Study Participant Characteristics\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"8\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"char\" char=\".\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c4\" colnum=\"4\"\u003e\u003c/div\u003e \u003cdiv align=\"char\" char=\".\" class=\"colspec\" colname=\"c5\" colnum=\"5\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c6\" colnum=\"6\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c7\" colnum=\"7\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c8\" colnum=\"8\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\" morerows=\"1\" rowspan=\"2\"\u003e\u0026nbsp;\u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/th\u003e \u003cth align=\"left\" colname=\"c3\" morerows=\"1\" rowspan=\"2\"\u003e \u003cp\u003eDiagnosis\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c4\" morerows=\"1\" rowspan=\"2\"\u003e \u003cp\u003eRelationship status at diagnosis\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c5\" morerows=\"1\" rowspan=\"2\"\u003e \u003cp\u003eChildren\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c6\" morerows=\"1\" rowspan=\"2\"\u003e \u003cp\u003eFP Discussion and/or Referral\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c7\" morerows=\"1\" rowspan=\"2\"\u003e \u003cp\u003eWho referred/ raised\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c8\" morerows=\"1\" rowspan=\"2\"\u003e \u003cp\u003eFP Follow through\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003eAge at diagnosis\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eP1\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e17\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003etesticular\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003esingle\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c5\"\u003e \u003cp\u003e0\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eY\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eSurgeon, GP, oncologist\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003eY\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eP2\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e49\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003etesticular\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003ecommon-law\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c5\"\u003e \u003cp\u003e1\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eY*\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eOncologist\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003eY\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eP3\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e25\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003etesticular\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003esingle\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c5\"\u003e \u003cp\u003e0\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eY*\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eMother\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003eY\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eP4\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e36\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003etesticular\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003emarried\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c5\"\u003e \u003cp\u003e0\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eY\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eOncologist\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003eY\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eP5\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e29\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eBurkitt\u0026rsquo;s-stage 4\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003esingle\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c5\"\u003e \u003cp\u003e0\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eY\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eCharge nurse\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003eN\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eP6\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e31\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003elymphoma\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003esingle\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c5\"\u003e \u003cp\u003e0\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eY\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eOncologist\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003eN\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eP7\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e37\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003etesticular\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003esingle\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c5\"\u003e \u003cp\u003e0\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eY\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eAYA program director/hcp team\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003eN\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eP8\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e31\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003etesticular\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003emarried\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c5\"\u003e \u003cp\u003e0\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eY\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eUrologist\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003eY\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eP9\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e34\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003etesticular\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003emarried\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c5\"\u003e \u003cp\u003e0\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eY\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eUrologist/oncologist\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003eN\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eP10\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e29\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003etesticular\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003emarried\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c5\"\u003e \u003cp\u003e1\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eY\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eUrologist and resident\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003eY\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eP11\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e27\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003etesticular\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003ecommon-law\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c5\"\u003e \u003cp\u003e0\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eY\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eSurgeon\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003eY\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eP12\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e22\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003elymphoma\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003esingle\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c5\"\u003e \u003cp\u003e0\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eY\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eHaematologist/oncologist\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003eY\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eAverage age\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e31\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003ctfoot\u003e \u003ctr\u003e\u003ctd colspan=\"8\"\u003eY* - Patient initiated conversation\u003c/td\u003e\u003c/tr\u003e \u003c/tfoot\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cp\u003e \u003c/p\u003e \u003c/div\u003e\n\u003ch3\u003eInformational support needs\u003c/h3\u003e\n\u003cp\u003eInformational support needs refer to the \u0026lsquo;nuts and bolts\u0026rsquo; or facts, verbal and written, about FP that cancer patients can draw from to guide their decisions. This includes where and how to access social/emotional resources (e.g., counselling) to help with management of their experiences of cancer and FP. The men\u0026rsquo;s informational needs were exemplified in the comment of one participant who said, \u0026lsquo;It\u0026rsquo;s hard when you don\u0026rsquo;t know what the questions are\u0026rsquo;, and in another who described the FP process as \u0026lsquo;stressful and uncomfortable\u0026rsquo; and like \u0026lsquo;walking down a hallway blindfolded [because] nobody knew how to do it\u0026rsquo; (P2a). Although most of the men said they were advised/encouraged to do FP, (\u0026lsquo;everybody told me to do it\u0026rsquo;), they described these discussions as quick and mostly verbal. They described the information they received at the point of diagnosis as \u0026lsquo;scant\u0026rsquo;, \u0026lsquo;very light\u0026rsquo; or \u0026lsquo;bare minimum\u0026rsquo;. One man said that his discussion about FP with his oncologist \u0026lsquo;wasn\u0026rsquo;t really a discussion\u0026rsquo;, other than a comment that chemo was related to infertility and he \u0026lsquo;should really, really, really do it\u0026rsquo; to avoid regret later (P1).\u003c/p\u003e \u003cp\u003eThe men\u0026rsquo;s accounts suggested they needed different types of information, not necessarily all at once but rather at different points in their diagnosis and treatment processes (See Figs, 1, 2 and Table\u0026nbsp;\u003cspan refid=\"Tab2\" class=\"InternalRef\"\u003e2\u003c/span\u003e). Our analysis suggested that at the point of diagnosis, the specific information the men needed included where and how to do FP. Here, they wanted to know about logistics\u0026mdash;clinics and how to access them, clinic processes\u0026mdash;wait times, what happens at clinics, (e.g., depositing samples, how many were needed). They also wanted to know how sperm storage worked, for instance length of storage, costs of storage, and financial supports if any. They had questions about sample analyses including genetic risk information, damage done to sperm, possibility of return to normal counts and how long after treatment this would happen. Post-treatment questions included how to access/use cryopreserved sperm, options for conception, relationship between sperm quality/counts and conception options, and statistical information/success rates of different conception methods.\u003c/p\u003e \u003cp\u003e \u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab2\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 2\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003e\u0026ndash; Unmet Informational Support Needs\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"1\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eInformational Needs\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eWhere and how to do fertility preservation (FP)\u003c/p\u003e \u003cp\u003e- steps/procedures before banking process\u003c/p\u003e \u003cp\u003e- clinic locations\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eClinic process: what happens at the clinic\u003c/p\u003e \u003cp\u003e- private/publicly funded\u003c/p\u003e \u003cp\u003e- documents to be completed/informed consent\u003c/p\u003e \u003cp\u003e- timing for accessing clinic\u003c/p\u003e \u003cp\u003e- aids for sperm production\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eSample deposit process\u003c/p\u003e \u003cp\u003e- no. of samples to deposit, under what conditions\u003c/p\u003e \u003cp\u003e- wait times between deposits\u003c/p\u003e \u003cp\u003e- ideal times for sperm collection\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eSperm storage /usage\u003c/p\u003e \u003cp\u003e- length of storage\u003c/p\u003e \u003cp\u003e- what to do with banked sperm that is not used/not needed\u003c/p\u003e \u003cp\u003e- sperm disposal (in cases of death, divorce, sperm counts return to normal)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eCost structure for deposits and storage\u003c/p\u003e \u003cp\u003e- coverage (insurance, government, out of pocket)\u003c/p\u003e \u003cp\u003e- costs for each deposit\u003c/p\u003e \u003cp\u003e- costs for storage: once, annually\u003c/p\u003e \u003cp\u003e- financial support available (what is covered, who is covered and under what conditions)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eGenetic risk information\u003c/p\u003e \u003cp\u003e- \u0026lsquo;what will I be passing on to my child?\u0026rsquo;\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eCancer and FP\u003c/p\u003e \u003cp\u003e- damage done to sperm from chemotherapy\u003c/p\u003e \u003cp\u003e- possibility of return to normal counts\u003c/p\u003e \u003cp\u003e- how long for return to normalcy\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eSample analysis\u003c/p\u003e \u003cp\u003e- what happens if counts are low\u003c/p\u003e \u003cp\u003e- when should samples be analysed, how soon post treatment, how many times\u003c/p\u003e \u003cp\u003e- limitations of testing (motility, volume, DNA)\u003c/p\u003e \u003cp\u003e- effects of age and disease on sperm count/quality\u003c/p\u003e \u003cp\u003e- sperm degradation over time\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eProcess for using banked sperm\u003c/p\u003e \u003cp\u003e- how to access clinics\u003c/p\u003e \u003cp\u003e- how to find health care practitioners to help with fertilization and implantation of embryos\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eOptions for conception\u003c/p\u003e \u003cp\u003e- how samples affect choice\u003c/p\u003e \u003cp\u003e- cut off levels for when different conception methods are used, e.g. ICSI, IVF and IUI\u003c/p\u003e \u003cp\u003e- implications of the different methods, pros and cons given individual circumstances (what\u0026rsquo;s best option for me?)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eStatistical information\u003c/p\u003e \u003cp\u003e- success rates of different methods\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cp\u003eThe written material to which they had access were mostly brochures, however the men said these did not give them an overall sense of \u0026lsquo;how it [FP] all worked\u0026rsquo;. One man said he did not remember getting any literature on FP but did see \u0026lsquo;a few sentences in a section of my booklet that said fertility can be affected and to avoid trying to conceive within 6 months of chemo\u0026rsquo; (P11). Even the men who had followed through with FP said they were still unclear and uncertain about the process.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u0026hellip; even the clinic\u0026hellip;didn\u0026rsquo;t really talk to me about it. They just kind of did it, as like a procedure\u0026hellip; \u0026ldquo;here\u0026rsquo;s the tube, fill it with this, come back, put your name on it and make sure it\u0026rsquo;s yours so we don\u0026rsquo;t mix them up\u0026rdquo;. (P8)\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eAnother participant said the clinic where he did FP was not forthcoming with adequate or detailed information and in one instance refused to give him information about his sperm analysis (\u0026lsquo;we don\u0026rsquo;t give it out, doctors have to request it\u0026rsquo; (P2)).\u003c/p\u003e \u003cp\u003eNotably, although some of the men described FP information as \u0026lsquo;light\u0026rsquo; or \u0026lsquo;pretty light\u0026rsquo; they also acknowledged they did not always read material they were given. Their accounts suggested experiences of overload, stress, or reluctance to receiving too much information. In some situations, FP information was given concurrently with diagnoses and treatment plans, which they experienced as overwhelming, particularly if they were alone during consultations. Their accounts were also suggestive of the challenges of assimilating the large amounts of information required to make informed decisions about their treatments and FP. One man described the rapid pace at which such details were conveyed during his consultation with care providers.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003eIt was like okay, well, we\u0026rsquo;re going to move as quickly as we can through, what you got, what are the side effects, okay, there\u0026rsquo;s an option to bank sperm, here are all these people you are about to meet. It was like go, go, go. Within like, less than a day\u0026hellip;. I met one of my oncologists and while he was going through all the side effects of chemo, which he said we would start the next day, he did mention the probability of infertility. He may or may not have said you have the option to bank sperm, that I don\u0026rsquo;t remember\u0026hellip;(P7)\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\n\u003ch3\u003eEmotional support needs\u003c/h3\u003e\n\u003cp\u003eThe men\u0026rsquo;s experiences suggested that they wanted both informational and emotional support. (See Table\u0026nbsp;\u003cspan refid=\"Tab3\" class=\"InternalRef\"\u003e3\u003c/span\u003e). While FP was perceived and presented as straightforward (\u0026lsquo;just getting a piece of paper and going to the clinic and just doing it\u0026rsquo;) and though some of the men appeared fairly satisfied with their FP experiences, others expressed dissatisfaction. One man\u0026rsquo;s account indicated his feelings of being alone and unsupported in his desire to do FP.\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab3\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 3\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003e\u0026ndash; Unmet Emotional Support Needs\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"1\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eEmotional Support Needs\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eGeneral emotional/mental health counselling\u003c/p\u003e \u003cp\u003e- post diagnosis/pre-treatment and during FP process\u003c/p\u003e \u003cp\u003e- post FP process (e.g., in cases of inability to bank sperm, treatment-related infertility)\u003c/p\u003e \u003cp\u003eInstitutional support for family/spouses\u003c/p\u003e \u003cp\u003e- how can families best support patients\u003c/p\u003e \u003cp\u003e- how can families be supported /emotional labour\u003c/p\u003e \u003cp\u003e- a navigator: where/how to find/get support\u003c/p\u003e \u003cp\u003e- a roadmap: how to manage stress/anxiety/brain fog, feelings of shock, vulnerability and helplessness, how to regain (greater) sense of control\u003c/p\u003e \u003cp\u003e- right-sized information (to avoid information overload)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cp\u003e \u003cdiv class=\"BlockQuote\"\u003e \u003cp\u003eHere\u0026rsquo;s a piece of paper with a phone number essentially, some colourful pamphlets and \u0026ldquo;figure it out\u0026rdquo;. And that only gave us one option, I don\u0026rsquo;t even know if there\u0026rsquo;s more places you can bank in the City\u0026hellip;. \u003cem\u003eNobody seemed to give a crap\u003c/em\u003e, like at the end of the day, it was up to [us] to try to figure out how to do this in a world where we didn\u0026rsquo;t even know anything about (P2a).\u003c/p\u003e \u003c/div\u003e \u003c/p\u003e \u003cp\u003eThey needed this participant said, more than encouragement to \u0026lsquo;just do it\u0026rsquo;. The men said they wanted or needed counselling/coaching in the immediate post-diagnosis and pre-treatment phases of their illness journey. They also wanted supports to be available long-term\u0026mdash;post treatment/survivorship, and they wanted this not just for themselves but also for family/caregivers. As one participant noted, \u0026lsquo;It [diagnosis and FP] broke my wife\u0026rsquo;.\u003c/p\u003e \u003cp\u003eThe men\u0026rsquo;s need for short- and long-term emotional support was exemplified in the comments of one participant who said, \u0026lsquo;You need someone holding your hand through it\u0026rsquo;. They needed some guidance, a roadmap, \u0026lsquo;someone to come in after the doctor and say okay, now you\u0026rsquo;ve had the diagnosis here is where we go from here\u0026rsquo; (P2). This approach he said could alleviate a lot of stress and anxiety. Emotional supports were crucial because the men experienced their diagnoses, treatment and infertility risks as feelings of shock, uncertainty, powerlessness and vulnerability (e.g., illness and infertility were threats to the masculine self).\u003c/p\u003e \u003cp\u003eFP decision-making was experienced as a directed not a deliberative one (\u0026lsquo;it wasn\u0026rsquo;t like the doctor presented it as a question\u0026rsquo;). It was experienced as physician and family hegemony, (\u0026lsquo;I really think you should bank sperm\u0026rsquo;, \u0026lsquo;the surgeon really pushed, just like pushing me to do it\u0026rsquo;, and \u0026lsquo;wouldn\u0026rsquo;t it be nice if we were grandparents\u0026rsquo;). Decisions about FP were made quickly, without much in-depth consideration or forethought (\u0026lsquo;I can\u0026rsquo;t say there is a decision\u0026hellip;There wasn\u0026rsquo;t any time to ponder what to do, its just a matter of \u0026ldquo;okay, essentially where\u0026rsquo;s the closest place to get it done and how do we do it\u0026rdquo;\u0026rsquo; (P2)). The urgency around treatment and FP decision-making was experienced as lack of control.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u0026hellip; it felt like a ride\u0026hellip; just caught up in this typhoon\u0026hellip; kind of banging around\u0026hellip; I felt like I was kind of just being strung along by this force of nature that was just pulling me and, I was kinda just going with it, just like, because my, my surgeon recommended [Cancer treatment center] \u0026lsquo;cause that was the best option and I was like \u0026ldquo;oh okay, I will go with that one\u0026rdquo;, and my parents kind of suggested that I should look into fertility and get some sperm frozen and I was like \u0026ldquo;okay, I will do that\u0026rdquo; and I was, I was in a, I was very suggestable, which probably wasn\u0026rsquo;t the best place to be\u0026hellip;. (P3)\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eThe need for short- and long-term emotional supports was also suggested by the men\u0026rsquo;s expressions of mixed feelings about FP outcomes and by decisional regret, i.e., their decisions were not fully informed, they were constrained choices, or were eclipsed by other considerations (\u0026lsquo;I had lots of other things on my mind\u0026rsquo;).\u003c/p\u003e\n\u003ch3\u003eMeeting men’s unmet needs: Challenges and tensions\u003c/h3\u003e\n\u003cp\u003eFP outcomes were influenced by factors outside the men\u0026rsquo;s control\u0026mdash; logistics (e.g. time constraints, clinic access, in/outpatient status), nature of diagnosis (e.g. diagnostic uncertainty, elongated diagnostic processes), illness severity (e.g., comorbidities such as edema), and resistance to diagnosis and to FP. Some of the men seemed ambivalent or pained by their FP outcomes. One described his missed opportunity to preserve sperm as \u0026lsquo;rolling the dice\u0026rsquo; while others who did FP had insurance or back-up plans. Those unable to bank sperm worried about how infertility might affect their quality of life long-term.\u003c/p\u003e \u003cp\u003eOur analysis suggests a tension between the men\u0026rsquo;s cancer treatment, FP, and informational and emotional support needs. As Fig.\u0026nbsp;\u003cspan refid=\"Fig3\" class=\"InternalRef\"\u003e3\u003c/span\u003e illustrates, logistics such as time constraints, which sometimes required coordination between FP clinics and treatment plans, and the nature of the men\u0026rsquo;s diagnoses influenced the quality and quantity of information they got or whether they got information at all. Illness severity, diagnostic processes, and emotional/psychological loads were also challenges to meeting men\u0026rsquo;s information needs. Diagnostic uncertainty delayed or precluded FP discussions because physicians\u003c/p\u003e \u003cp\u003e \u003c/p\u003e \u003cp\u003eperceived it was premature, or they wanted to avoid exacerbating patients\u0026rsquo; psychological and emotional distress (\u0026lsquo;we are not there yet; I\u0026rsquo;m not going to give you too much information\u0026rsquo;). In cases of illness severity, FP was only briefly mentioned or not raised during consultations. Both physicians and patients prioritized treatment (\u0026lsquo;the doctors didn\u0026rsquo;t want to wait, they wanted to start chemo right away\u0026rsquo; (P6); \u0026lsquo;because I am super sick and if I [delayed treatment] I probably wouldn\u0026rsquo;t be around to use it\u0026rsquo;(P5)).\u003c/p\u003e"},{"header":"Discussion","content":"\u003cp\u003eThrough this secondary analysis of qualitative data about men\u0026rsquo;s experiences of cancer and FP, we begin to make sense of their unmet FP needs. Meeting these needs involves providing answers to questions they may not have anticipated, offering comprehensive information about infertility risks, ways to preserve fertility and options to assess fertility status [\u003cspan citationid=\"CR45\" class=\"CitationRef\"\u003e45\u003c/span\u003e]. Perceptions of FP as straightforward can hinder meeting men\u0026rsquo;s support needs. And although predicting the exact effects of cancer treatments on fertility is difficult [\u003cspan citationid=\"CR46\" class=\"CitationRef\"\u003e46\u003c/span\u003e] and FP can be a complex process [\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e], our findings suggest these men needed and wanted detailed information and counselling/emotional support resources. This conclusion is consistent with Ginsberg et al. [\u003cspan citationid=\"CR47\" class=\"CitationRef\"\u003e47\u003c/span\u003e] who showed that patients want these supports, preferably early in their treatment process.\u003c/p\u003e \u003cp\u003eThe men experienced FP decisions as physicians\u0026rsquo; dictates rather than as informed personal choices. This \u0026lsquo;guidance-cooperation model\u0026rsquo; [\u003cspan citationid=\"CR48\" class=\"CitationRef\"\u003e48\u003c/span\u003e] of doctor-patient communication while on one hand is intended to avoid overwhelming patients with information, it can seem paternalistic and might reduce their sense of control. The latter Arora et al. [\u003cspan citationid=\"CR49\" class=\"CitationRef\"\u003e49\u003c/span\u003e] and Hong et al. [\u003cspan citationid=\"CR50\" class=\"CitationRef\"\u003e50\u003c/span\u003e] have argued can affect quality of life. Right-sizing information to avoid overload is challenging\u0026mdash;too much or too little or none is equally problematic. Providing detailed information about FP during discussions about diagnosis and treatment may contribute to increased psychological and emotional distress. Information about infertility risks may also be negatively received [\u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e, \u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e]. Logan et al. [\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e], reported elevated rates of depression, anxiety and trauma among cancer patients time of diagnoses, which persisted throughout FP discussions and treatments. They recommended integration of FP care into a broader psychological care model for patients.\u003c/p\u003e \u003cp\u003eIn their systematic review of 61 articles, Klinj et al. [\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e] identified three key support resources needs: discussion of infertility risks with patients, consideration of the importance of future fertility, and provision of (verbal and written) patient-specific information. Although Klinj et al. [\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e] highlighted the need for more comprehensive information that was tailored to patients\u0026rsquo; survivorship stage, they did not specify the types of information, and male survivors were inadequately represented in the samples of the original studies in the review. We expanded on these findings by detailing men\u0026rsquo;s information and emotional support needs, including FP basics\u0026mdash;how to access clinics, how to use preserved sperm, conception options and emotional supports, which are needed at different points in their diagnosis, treatment and survivorship journey.\u003c/p\u003e \u003cp\u003eThe finding of men\u0026rsquo;s unmet informational and emotional support needs in the context of cancer and FP contrasts with Benedict\u0026rsquo;s [\u003cspan citationid=\"CR45\" class=\"CitationRef\"\u003e45\u003c/span\u003e] finding among female cancer patients who reported that they did not pursue FP due to reasons such as feeling overwhelmed and/or lack of awareness about it. In our study, men were made aware of and were encouraged to preserve their fertility but they received insufficient information about how to do it. Although under-utilization of sperm cryopreservation has been linked to lack of information [\u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e, \u003cspan citationid=\"CR51\" class=\"CitationRef\"\u003e51\u003c/span\u003e], this study shows men underwent FP despite having limited knowledge or understanding of the subject.\u003c/p\u003e \u003cdiv id=\"Sec8\" class=\"Section2\"\u003e \u003ch2\u003eStrengths and limitations:\u003c/h2\u003e \u003cp\u003eIn this study we analysed secondary qualitative data to examine the unmet support needs of 12 men undergoing cancer treatment and who faced infertility. Participants were chosen based on their capacity to provide rich descriptions about the topics [\u003cspan citationid=\"CR52\" class=\"CitationRef\"\u003e52\u003c/span\u003e]. Although we achieved informational redundancy, whereby no new information was forthcoming [\u003cspan citationid=\"CR53\" class=\"CitationRef\"\u003e53\u003c/span\u003e, \u003cspan citationid=\"CR54\" class=\"CitationRef\"\u003e54\u003c/span\u003e] the small sample means the findings have limited generalisability to other situations/contexts. We initially theorized that different cancer diagnoses (e.g., lymphoma patients) might have different experiences of FP, different social support needs and that different locations/context (e.g., clinic access, time constraints) might provide different insights into support needs. Further research on these differences and patients\u0026rsquo; informational and emotional needs is recommended.\u003c/p\u003e \u003cp\u003eThe COVID pandemic posed challenges to achieving maximum variation and a larger sample. Nonetheless these findings likely have naturalistic generalisability [\u003cspan citationid=\"CR54\" class=\"CitationRef\"\u003e54\u003c/span\u003e, \u003cspan citationid=\"CR55\" class=\"CitationRef\"\u003e55\u003c/span\u003e] or resonance with readers and their settings. The findings also have analytical generalisability [\u003cspan citationid=\"CR56\" class=\"CitationRef\"\u003e56\u003c/span\u003e], i.e., conceptualising the men\u0026rsquo;s unmet needs as social supports, which can be considered social determinants of health for cancer survivors. Our enumeration of these needs offers starting point for thinking about the development of decision-aids and for navigating the FP process. The findings can also serve as a springboard for discussions about resource development such as personalized social supports, champions [\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e], patient navigators and FP advanced practice nurses [\u003cspan citationid=\"CR57\" class=\"CitationRef\"\u003e57\u003c/span\u003e] who can steer men through both their cancer diagnoses/treatment and FP processes. Also, by highlighting situational factors this study highlights the need for further study of potential causes, beyond information gaps, that may contribute to the under utilisation of FP.\u003c/p\u003e \u003c/div\u003e"},{"header":"Conclusion","content":"\u003cp\u003eThe men\u0026rsquo;s FP decisions appeared straightforward, but our findings show a complex process. They did not get adequate information to make fully informed decisions and so experienced FP as a directive rather than deliberative process. Their experience left them with unanswered questions and in need of more support and counselling. Balancing patients\u0026rsquo; informational needs and well-being remains a challenge. FP conversations need to be individualized and as Klijn et al. [\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e] note, clearer FP healthcare pathways need to be developed. A patient-centered approach will \u0026lsquo;optimize FP experiences and help to establish a process to achieve long-term follow up after FP treatment\u0026rsquo; [\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e]. The unmet needs articulated here are not an exhaustive list. This study serves as starting point for further research into how men facing fertility-threatening cancer treatments (and their families) can be more effectively socially and emotionally supported.\u003c/p\u003e \u003cp\u003eIn sum, this study highlights the importance of providing patients with opportunities and resources to communicate with care providers within and outside their oncology teams. In North America the development of dedicated resources/programs for adolescent and young adults (AYAs) in oncology are growing. Dedicated advanced practice nurses or social workers who are knowledgeable about treatment and FP procedures can assist patients with decision-making. They can also be helpful with knowledge dissemination, patient comfort and cost recovery advocacy.\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003eDisclosure of competing interests:\u003c/p\u003e\n\u003cp\u003eThe authors have no relevant financial or non-financial interests to disclose.\u003c/p\u003e\n\u003cp\u003eEthics approval:\u003c/p\u003e\n\u003cp\u003eThe study received ongoing ethics approval from the hospital’s Research Ethics Board (#18-237).\u0026nbsp;The procedures used in this study adhere to the tenets of the Declaration of Helsinki.\u003c/p\u003e\n\u003cp\u003eInformed consent:\u003c/p\u003e\n\u003cp\u003eParticipants verbally agreed to participate in the study and to be recontacted later if necessary. All data are anonymized.\u003c/p\u003e\n\u003cp\u003eAcknowledgements:\u003c/p\u003e\n\u003cp\u003eThe authors wish to thank Tari Little for recruitment and coordination of the interviews. \u0026nbsp;We also wish to thank the participants for their time and for sharing their stories with us.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eAuthor Contributions:\u003c/p\u003e\n\u003cp\u003eConceptualisation and methodology: NNB, MEF, LKH, AAG, KAJ\u003c/p\u003e\n\u003cp\u003eCollection and assembly of data: MEF, BS, AMS\u003c/p\u003e\n\u003cp\u003eFormal analysis and interpretation: MEF, NAB\u003c/p\u003e\n\u003cp\u003eWriting – original draft: MEF, NAB\u003c/p\u003e\n\u003cp\u003eWriting – reviewing and editing: NNB, MEF, NAB, LKH, AAG, KAJ\u003c/p\u003e\n\u003cp\u003eFunding acquisition: NNB, LKH, AAG, KAJ\u003c/p\u003e\n\u003cp\u003eResources: AMS\u003c/p\u003e\n\u003cp\u003eSupervision: NNB\u003c/p\u003e\n\u003cp\u003eFunding:\u003c/p\u003e\n\u003cp\u003eThis research was supported by grants from\u0026nbsp;The Canadian Institutes of Health Research (PCG-155445 and FDN-148470).\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eData availability:\u003c/p\u003e\n\u003cp\u003eData for this study are (semi-structured) interview transcripts. 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SAGE Publications\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eStake RE TD (1982) \"Naturalistic Generalizations,\" Review Journal of Philosophy and Social Science: 1\u0026ndash;12.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003ePolit DF, Beck CT (2010) Generalization in quantitative and qualitative research: myths and strategies Int J Nurs Stud 47: 1451\u0026ndash;1458. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.1016/j.ijnurstu.2010.06.004\u003c/span\u003e\u003cspan address=\"10.1016/j.ijnurstu.2010.06.004\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eHendershot E, Maloney AM, Fawcett S, Sarvanantham S, McMahon E, Gupta A, Mitchell L (2016) Advanced practice nurses: Improving access to fertility preservation for oncology patients Can Oncol Nurs J 26: 40\u0026ndash;45. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.5737/236880762614045\u003c/span\u003e\u003cspan address=\"10.5737/236880762614045\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e\u003c/span\u003e\u003c/li\u003e\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":true,"highlight":"","institution":"","isAcceptedByJournal":false,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true},"keywords":"fertility preservation, men’s health, cancer survivorship, informational needs, qualitative research","lastPublishedDoi":"10.21203/rs.3.rs-6559374/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-6559374/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003ch2\u003eIntroduction\u003c/h2\u003e \u003cp\u003eDeveloping timely, adequate informational and emotional support to help patients make informed decisions about fertility preservation (FP) is an ongoing challenge. Men undergoing cancer treatment face risks to their fertility which, if not effectively managed, may adversely affect their quality-of-life post-treatment. Research indicates that while they are regularly advised or encouraged to pursue FP, men often receive insufficient information about it. Despite the extensive literature on cancer patient support, the informational needs of men as they relate to FP have been largely unaddressed.\u003c/p\u003e\u003ch2\u003eMethod\u003c/h2\u003e \u003cp\u003eWe used a qualitative secondary analysis of a subset of data from a larger study of clinicians\u0026rsquo; perspectives and experiences of FP, as well as women and men\u0026rsquo;s experiences of cancer and FP, and a thematic analysis approach to answer the question, what are men\u0026rsquo;s unmet informational and emotional needs related to the FP process and what are the challenges and tensions inherent in meeting them?\u003c/p\u003e\u003ch2\u003eFindings\u003c/h2\u003e \u003cp\u003eParticipants were 12 men, \u0026gt;\u0026thinsp;18 who had undergone fertility-threatening cancer treatments for a malignancy within the previous 5 years and who faced onco-fertility decisions before cancer treatments. Men experienced unmet support needs. They received neither enough emotional nor enough informational support to make fully informed decisions, and they experienced FP decisions as directives rather than as informed deliberations. They needed different kinds and amounts of information at different stages of their illness journey. Logistics, physiological and psychological challenges impeded meeting these needs.\u003c/p\u003e\u003ch2\u003eConclusions\u003c/h2\u003e \u003cp\u003eRight sizing FP information in the context of cancer diagnoses continues to be a challenge. This preliminary exploration of the unmet FP needs of men diagnosed with cancer is a useful first step to inform resource development related to counselling men who face threats to their fertility via cancer treatments.\u003c/p\u003e\u003ch2\u003eImplications\u003c/h2\u003e \u003cp\u003eGiven the potentially negative effects on quality of survivorship when FP issues are not effectively addressed, it is crucial that men\u0026rsquo;s fertility management go beyond advising the pursuit of FP to provision of resources necessary to do so. These findings can serve as a springboard for further research and discussions of such goals.\u003c/p\u003e","manuscriptTitle":"Fertility preservation needs of men undergoing cancer treatment: An explorative qualitative study","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2025-05-15 02:23:41","doi":"10.21203/rs.3.rs-6559374/v1","editorialEvents":[{"type":"communityComments","content":0}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"b37ad7bf-522b-4cf6-8713-7f1db20af109","owner":[],"postedDate":"May 15th, 2025","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"posted","subjectAreas":[],"tags":[],"updatedAt":"2025-10-27T14:38:17+00:00","versionOfRecord":[],"versionCreatedAt":"2025-05-15 02:23:41","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-6559374","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-6559374","identity":"rs-6559374","version":["v1"]},"buildId":"8U1c8b4HqxoKbykW_rLl7","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}