Family Communication about Fertility Preservation in Adolescent Males Newly Diagnosed with Cancer

Abstract

Background:

Approximately half of male childhood cancer survivors experience fertility impairment, which can cause psychological distress. Sperm banking remains underutilized among adolescent males with cancer. Parent recommendation influences banking decisions, yet multi-informant studies have not been conducted to examine fertility preservation (FP) communication and decision-making in this population. This study explored FP-communication among mothers, fathers, and their male adolescents newly diagnosed with cancer.

Procedure:

Thirty-three male adolescents, 32 mothers, and 22 fathers completed semi-structured interviews one-to-two-months after cancer diagnosis addressing this question: Tell me more about conversations you had about fertility preservation/sperm banking with your health care providers, parents/son, other family members, or anyone else. Interviews were audio-recorded and transcribed verbatim for thematic content analysis.

Results:

Five process themes emerged: (1) reliance on healthcare team and social support networks to facilitate FP decisions (only parents); (2) withholding parental opinion and deferring the decision to the adolescent; (3) ease of communication (primarily adolescents); (4) communication barriers/facilitators; (5) not being present or not remembering details of FP conversations with healthcare providers (primarily fathers and adolescents). Four content themes included: (1) preference for biological (grand)parenthood; (2) consideration of adolescent’s future partner’s desire for biological parenthood (primarily parents); (3) banking while it is a viable option; (4) openness to alternative parenthood options (e.g.,adoption/fostering, primary parents).

Conclusions:

Understanding variation in what family members discuss and consider relevant when making FP decisions is an important step towards improving pediatric oncofertility care. Interventions are needed to facilitate family FP-related conversations and optimize decisional satisfaction over time.

Introduction

A growing number of childhood cancer survivors enter adulthood at-risk for adverse treatment-related outcomes, including infertility from adjuvant cancer treatment regimens.^1,2 Multiple professional organizations recommend counseling about fertility preservation (FP) prior to treatment, which has been increasingly incorporated into standards of care within pediatric oncology.^3,4 These consultations are intended to provide families with information on infertility risk and FP options.^5,6 Many adolescents both with and without cancer have expectations and/or goals for future parenthood.^7,8 Although alternative methods to parenthood exist (e.g., adoption), adolescents and their families often lack knowledge of these processes and may underestimate future challenges to reaching parenthood goals.⁹

Despite the expanding availability of fertility consultations, sperm banking rates remain under 50% at pediatric cancer centers.^10,11 These low utilization rates demonstrate the need for further research to understand how adolescents and their families make FP decisions before cancer treatment. Recent studies have identified parents, and especially fathers, play an important role in influencing adolescents’ decision whether or not to pursue sperm banking.^12–14 However, parents often have limited conversations about FP and may defer the FP decision to their son.¹⁵ Research pertaining to patient–partner FP communication among young adults newly diagnosed with cancer found that most young adults desired collaborative FP discussions and decisions with their romantic partner,¹⁶ but research is lacking in younger adolescent populations where parents may be the salient collaborative partner. Indeed, although FP decision making has been explored separately among female youth, male youth, and parents,¹⁷ to our knowledge, no studies have concurrently investigated all family members’ perspectives about the FP communication process. This is a critical gap in our knowledge, as understanding these perspectives concurrently allows for comparisons across groups and a more holistic view of how families discuss and make FP decisions. This information may better inform clinical practice, and perhaps lead to improvements in FP rates. Therefore, the aim of this study was to qualitatively examine communication about FP from multiple family members’ perspectives, with the ultimate goal of optimizing family-centered pediatric FP care and decisional satisfaction.

Methods

Qualitative data were collected as part of a larger Institutional Review Board-approved study examining FP decision-making in male adolescents newly diagnosed with cancer. During the study period (October 2017–March 2020), adolescents and their parents were recruited by trained research staff following an automatic and routine fertility consult at a large pediatric institution. This fertility consult included discussion of individualized infertility risk due to cancer treatment and FP options. During these consults, the fertility navigator (an oncology nurse practitioner) made efforts to speak to family members together and separately, when possible. After the consult, the navigator would briefly introduce the research study. Adolescents (and up to two parents/caregivers) were deemed eligible if they were: male; 12–25 years of age (consistent with those eligible for sperm banking at the institution); scheduled for chemotherapy and/or radiation to treat a newly diagnosed cancer; pubertal/eligible for sperm banking (at least Tanner 2–3 as determined during fertility consult); developmentally/cognitively able to complete measures independently; and proficient in English.

Procedures

Visit 1.

Adolescents and their parents were approached following the fertility consult, before initiation of cancer treatment. Research assistants explained study procedures and obtained consent (or assent if adolescent was <18). Parents and adolescents completed a demographic questionnaire and FP values clarification tool separately.¹⁸ Adolescents’ diagnosis and treatment information was obtained from medical records using standardized abstraction procedures. Participants received a $5 meal card following Visit 1.

Visit 2.

Adolescents and parents were approached approximately 1–2 months after Visit 1 in the inpatient/outpatient setting, or via telephone. During this visit, trained research assistants conducted one-on-one semi-structured interviews with parents and adolescents separately to explore FP decision-making and family communication. Following the interview, participants received a $20 gift card.

Data were derived from responses to these Visit 2 questions: Tell me more about the conversations you had about fertility preservation/sperm banking with your health care providers, A) What about with your mom and dad (parent interview: What about with your son?), B) What about with other members of your family, or anyone else?

Analysis

Interviews were audio-recorded and transcribed verbatim by trained research staff. All transcripts were reviewed by four research team members (AO, CT, TM, LN), with input from CG. Thematic analysis was conducted using the constant comparative method and inductive identification of themes.¹⁹ During this process, transcripts were independently reviewed by the three coders (AO, CT, TM) in groups of 5–10, and emergent themes were identified and discussed. As the largest group, mothers’ transcripts were reviewed first. Then, coders analyzed fathers’ and adolescents’ transcripts. Saturation was reached at 44 interviews, but all transcripts were reviewed and coded. Then, two coders (AO & CT) used NVivo independently to identify frequency counts for each theme by participant. Kappa coefficients were calculated using SPSS and ranged from 0.83 to 1.00, which is considered strong to almost perfect agreement.²⁰

Results

Participants

Of the 41 families approached, 39 families had at least one member (i.e., mother, father, and/or adolescent) agree to participate. In total, 33 adolescents, 32 mothers, and 22 fathers representing 37 families completed qualitative interviews in Visit 2 (demographic characteristics presented in Table 1). Among the 33 participating adolescents, ages ranged from 12.33 to 20.75 years (M = 16.29, SD = 2.25 years). Of the 37 families, 22 (59%) had an adolescent attempt to bank sperm.

TABLE 1.

Sample Characteristics

	Adolescents		Mothers		Fathers
	N	%	N	%	N	%
Race
White	26	79%	29	91%	19	86%
Black	1	3%	2	6%	-	--
Native Hawaiian/Pacific Islander	4	12%	1	3%	1	5%
Other	2	6%	-	--	2	9%
Ethnicity
Non-Hispanic/Latino	28	85%	32	100%	20	91%
Hispanic/Latino	1	3%	-	--	1	5%
Relationship Status
Single/ Separated/Divorced	22	67%	7	22%	5	23%
Married/Engaged/In a Serious Relationship	7	21%	25	78%	17	77%
Religion
Christian	18	55%	26	81%	13	59%
Catholic	3	9%	-	--	1	5%
Jewish	1	3%	1	3%	1	5%
Muslim	-	--	1	3%	-	--
Agnostic	-	--	1	3%	3	14%
None	5	15%	2	6%	3	14%
Other	2	6%	1	3%	1	5%
Income
Less than $25 000			3	9%	1	5%
$25 000 – $49 999			6	19%	2	9%
$50 000 – $74 999			6	19%	4	18%
$75 000 – $99 999			8	25%	5	23%
$100 000 – $149 999			3	9%	4	18%
$150 000 or more			4	13%	6	27%
Unsure			2	6%
Level of Education
Some High School			2	6%
High School Diploma or GED			6	19%	2	9%
Some College, No Degree			6	19%	9	41%
Associate Degree			4	13%	2	9%
Bachelor’s Degree			10	31%	4	18%
Graduate or Professional Degree			3	9%	4	18%
Other			1	3%	1	5%
Diagnosis Type
Brain or Spinal Cord Tumor	4	12%
Leukemia	8	24%
Lymphoma	11	33%
Solid Tumors	9	27%
Other	1	3%
Risk for Infertility
Minimally Increased Risk	12	36%
High Level of Increased Risk	21	64%

Qualitative Interview Themes

Thematic analysis of all 87 interviews revealed mothers, fathers, and adolescents highlighted: (a) five themes regarding the process by which communication about infertility risk and fertility preservation occurred and (b) four themes regarding the content of these conversations (Fig. 1). Specifically, five process themes included: (1) reliance on healthcare team and social support networks to facilitate fertility preservation (FP) decisions (noted just by parents), (2) withholding parental opinion and deferring the decision to the adolescent, (3) ease of communication, (4) communication barriers and facilitators, and (5) not being present or not remembering details of FP conversations with healthcare providers (Table 2). Four content themes included: (1) preference for biological (grand)parenthood, (2) consideration of adolescent’s future partner’s desire for biological parenthood, (3) banking while it is a viable option, and (4) openness to alternative parenthood options (e.g., adoption/fostering) (Table 3).

Figure 1.

Family Communication about Fertility Preservation

TABLE 2.

Counts, Percentages, and Quotes for Process Themes

	Adolescent (N=33)			Mother (N=32)			Father (N=22)
	N	%		N	%		N	%
1. Reliance on healthcare team and social support networks to facilitate fertility preservation decisions	1	3%		15	47%		7	32%
1.a. Appreciation for information received from the oncologist and fertility team	-	--		9	28%	“It was amazing that they thought of that because…it also gave you that little bit of hope…you think your world is crashing down and your son may not live, but here is somebody saying, ‘Hey, when your son grows up and has kids, this is available.’”	3	14%	“This would be the case with just about everything in terms of the advice and guidance that we’ve received from the medical team, it’s never felt like you have to do this, it’s more been here’s what we’ve experienced, here’s what we’ve seen, here’s what studies say…they’ve left things to us to be able to talk about as a family and make the decisions, which is nice.”
1.b. Guidance or financial support from extended family and friends	1	3%		7	22%	“At the time, we were already talking to another family whose son also had testicular cancer, and she emphasized the importance of that [fertility preservation].” “I discussed it with his sisters, his brother, and his grandparents and everybody was on board with it. Everybody told me even though it’s set up through my bank account, and they take out the money, they said that each and every month somebody else will pay for it.”	4	18%	“He ended up talking to, we have really close family friends that adopted because they couldn’t have kids.”
2. Withholding parental opinion and deferring the decision to the adolescent	4	12%	“They just said it was my choice. They didn’t really care either way…there wasn’t really much discussion about it.” “They were just kind of straight up about it. Like, do you want to? I said no.”	8	25%	“It didn’t really matter one way or the other to me. He’s 17 years old. It’s his body. It’s his future. It was his decision.”	7	32%	“We’re the guardians so we can make the decisions, but obviously we decided [our son] needs to make the decision even though he’s a twelve-year-old kid.”
3. Ease of communication	11	33%	“Oh, really well. I was really comfortable with [talking to my parents]. They were really helpful.”	5	16%	“It was easy for us to say what we had to say, and he laughed about it…It was easy, so it went good.”	4	18%	“We just had that normal conversation…it wasn’t any, I mean, I don’t know. I didn’t feel the need to crack jokes, which I normally would…it was a pretty straightforward process.”
4. Communication barriers and facilitators	5	15%		21	66%		9	41%
4.a. Challenges due to a sense of awkwardness or embarrassment	4	12%	“When he [doctor] first brought it up… I thought it was awkward that he was bringing it up in front of my parents.”	11	34%	“He was very embarrassed to talk about it with me…completely embarrassed.”	4	18%	“I know it’s embarrassing…to talk to us about it… especially the process of what he has to do. For him, it’s kind of embarrassing.”
4.b. Perceived comfort of communication among males	2	6%	“Well, I really didn’t speak with my mom; I spoke more with my dad because he was the one who would understand it more.”	9	28%	“It was more…in a joking way too because every time I would hear them talk about it…in a manly joking way…they were pretty comfortable talking to each other about it and…they’re more…on a guy level talk than me.”	3	14%	“He didn’t want to discuss it with his mom, which is natural… but we had discussions with it where we brought it up with two of the doctors and so forth.”
4.c. Challenges due to son’s young age, naivety, and/or limited knowledge	-	--		9	28%	“[Our sonert is only 13. We knew obviously girls are gross, and you don’t want babies so it…was really weird because he didn’t really want to talk.”	5	23%	“We talked with [our son] and it’s…hard talking to a 15-year-old when he’s in that stage of his life.”
4.d. Limited communication due to time constraints	-	--		6	19%	“The physician who heads it came in…had a very short conversation and then had a very short conversation with my son alone, and we didn’t have a whole lot of time…it was very short.”	-	--
5. Not being present or not remembering details of conversations with healthcare providers about fertility preservation	11	33%	“I don’t remember…I think the chemo or just this in general is affecting my memory, okay, so I don’t really remember much.” “I wish I would’ve really listened…all they told me is that I might need it in the future…That’s what I can remember. I usually had mom answer all my questions.”	4	13%	“I don’t really remember. I just remember that they said there was a high probability of him being infertile, and they wouldn’t know until obviously later.”	7	32%	“I wasn’t in the room when they initially came in, so I really didn’t have much conversation.”

TABLE 3.

Counts, Percentages, and Quotes for Content Themes

	Adolescent (N=33)			Mother (N=32)			Father (N=22)
	N	%	Example Quote	N	%	Example Quote	N	%	Example Quote
1. Preference for biological (grand) parenthood	8	24%	“From a biblical perspective with my family, I kind of wanted to do it as well, so biological.”	12	38%	“My son said yes I do want to have children…any child wants to grow up and have biological children, and me as a mom, I want my children to have children because I enjoy being a grandma.”	5	23%	“We just said to him that as a parent how we were feeling that we felt that we would love to see the bloodline move on.”
2. Consideration for son’s potential future partner’s desire for biological parenthood	1	3%		5	16%	“He didn’t really give us an answer until I phrased it as do you think that possibly who you marry would want your child? … with your face or with your eyes or genetically yours? That’s when he decided that it was something to do.”	4	18%	“I said well what about how she would feel…if you got into a relationship where she wanted to have children and the only way that you could do it was if you had, to go to a sperm bank…so his mentality about that was ‘I will let her know up front before we got into a stronger relationship’”
3. Importance of banking while it is a viable option	11	33%	“They told me that I should get it because you never know what might happen, and they think it’s necessary just in case it does happen I can have a plan B.”	10	31%	“We just don’t want our son to be limited. We want his options to be endless, and if he decides he doesn’t want to have a child, then he has a right to make that decision, but if something happens down the road…he has that option preserved.”	5	23%	“We explained to him that the chemo treatments could affect his ability to have children in the future and that by storing the sperm sample that it could increase his chances in the future.”
4. Openness to alternative parenthood options (such as adoption/ fostering)	2	6%	“They were…mostly just like what would I do if I was infertile and didn’t do the sperm banking or anything… Adoption, sperm donors.”	7	22%	“He right up front said, ‘well I can always adopt,’ or he talked about foster care. So, he said he will be willing to do that…I’m totally fine with him adopting.”	7	32%	“When I had my discussion with [my son] it was ‘Hey, we could do this. We don’t have to. You may be fertile, but plenty of people are adopted as well, and that’s a great route to go,’ and I named all the people that he knows.”

Process of Communication

1. Reliance on healthcare team and social support networks to facilitate FP decisions

Two subthemes were identified pertaining to parents’ appreciation for information about FP in the context of a new cancer diagnosis.

1.a. Appreciation for information received from the oncologist and fertility team

Parents, but not sons, expressed appreciation for the information they received from their healthcare team. For some, this was expressed as gratitude for being educated on a topic they otherwise would not have considered in the context of their son’s care. Others appreciated their healthcare teams’ approach in providing information and even some recommendations, but without pressure, thereby reflecting a collaborative decision-making process between healthcare providers and families.

1.b. Guidance or financial support from extended family and friends

Some parents, but not sons, reported receiving information, advice, and support from extended family, friends, and other parents with adolescents who had similar experiences. For instance, parents learned about friends’ and relatives’ experiences with adoption or the use of reproductive-assisted technologies, including sperm banks. This aided parents in understanding the complexities of fertility-related issues and facilitated their discussions with their sons. Finally, some mothers also expressed receiving financial support from extended family to assist with sperm banking-related costs, highlighting how invested families, even grandparents, siblings, or aunts and uncles, can be in safeguarding future fertility options.

2. Withholding parental opinion and deferring the decision to the adolescent

When asked about FP-related conversations that occurred between parents and adolescents, some participants from all three groups described parents withholding their opinion about FP and deferring the decision to the adolescent. For parents (approximately one-quarter of mothers and one-third of fathers), this decision was often motivated by a desire to allow the adolescent to make the final decision regarding his reproductive future, regardless of age or developmental stage. In these cases, parents stated they did not want to say much because they did not want to influence the adolescent’s decision. Similarly, some adolescents noted that their parents did not play a role in influencing their decision because they believed that it was their own decision.

3. Ease of communication

For some family members, conversations about banking were described as easy or comfortable due to a sense of openness within the family, which allowed for conversation about more sensitive topics. Others described these conversations as “normal” and straightforward due to the context of a new diagnosis and urgency that accompanies the decision of whether to pursue FP. Although all participant groups discussed these characterizations, this theme was most prevalent among adolescents, with one-third of adolescents recalling conversations as neutral or positive.

4. Communication barriers and facilitators

Four subthemes were identified describing barriers and facilitators to FP communication. Of note, while two-thirds of mothers reported barriers to communication, fewer fathers and adolescents noted challenges.

4.a. Challenges due to a sense of awkwardness or embarrassment

More mothers (approximately one-third) reported a sense of awkwardness or embarrassment when discussing FP compared to fathers and adolescents. Some participants found the topic difficult to discuss because it involved discussing the process of obtaining a sperm sample, even when they described otherwise easy parent–child relationships and communication.

4.b. Perceived comfort of communication among males

Approximately one-quarter of mothers believed that FP conversations were easier or more natural between their sons and other males, such as fathers or male healthcare providers. Mothers viewed this as a barrier to their own FP communication with their sons. Some fathers and a few adolescents described greater ease in male-only conversations, which was often framed as a facilitator to FP communication.

4.c. Challenges due to son’s young age, naivety, and/or limited knowledge

Some parents found conversations to be challenging due to their son’s young age or naivety, whereas adolescents did not discuss age-related or knowledge-related barriers. Many family members mentioned that their sons were just beginning to learn about sex-related topics, so they were inexperienced, and sometimes even scared, regarding masturbation. Additionally, parents said that the idea of their son being a parent was a topic of conversation that had never crossed their minds or been discussed due to their son’s young age.

4.d. Limited communication due to time constraints

Some mothers reported experiencing time as a constraint to FP conversations. They described conversations being cut short due to imminent treatment and feeling rushed to decide.

5. Not being present or not remembering details of conversations with healthcare providers about FP

Participants from all three groups expressed difficulties recalling conversations about FP with healthcare providers. Among the approximately one-quarter of adolescents who described this subtheme, some adolescents reported that recalling conversations was difficult due to their health status at cancer diagnosis, such as physical symptoms resulting from their diagnosis that made it difficult to engage in discussions. Other adolescents reported deferring FP conversations with their healthcare team to their parents. Among fathers, not remembering was sometimes discussed as a result of not being present during the consultation.

Content of Communication

1. Preference for biological (grand)parenthood

For approximately one-third of mothers, one-quarter of adolescents, and one-quarter of fathers, FP conversations involved a discussion about biological parenthood. Parents urged adolescents to think about their future and consider aspects of biological parenthood that make it a unique choice among other routes to parenthood (e.g., genetics/ carrying on the bloodline). Additionally, adolescents mentioned biological parenthood as a preferred option and often framed it as something that they had thought about before. This was discussed not only in the context of the adolescent’s desire for biological children, but also in the context of mothers’ and fathers’ desire for biological grandchildren.

2. Consideration of adolescent’s future partner’s desire for biological parenthood

Some participants (mainly parents) mentioned that conversations about FP included consideration of the adolescent’s future romantic partner’s potential preferences for biological parenthood. For example, adolescents who reported being content without a biological child were encouraged to consider whether a future partner may desire a shared biological child one day. Additionally, these conversations included discussions of the adolescent’s need to be forthcoming with future partners about their fertility status.

3. Importance of banking while it is a viable option

Even for those who did not view biological parenthood as a priority, approximately one-third of adolescents, one-third of mothers, and one-quarter of fathers, discussed the importance of banking before beginning cancer treatment in case the adolescent’s parenthood goals change in the future. These family members described sperm banking as a means to safeguard the adolescent’s future ability to have a biological child. Sometimes these conversations occurred after an adolescent noted they were unsure about their future goals. In these situations, parents often guided their sons to consider sperm banking as a “plan B” in case of fertility struggles in the future.

4. An openness to alternative parenthood options (such as adoption/fostering)

Within conversations about parenthood goals/options, family members recalled discussing topics related to alternative routes to parenthood (e.g., adopting, fostering, utilizing a sperm donor). This idea was sometimes brought up as rationale for forgoing FP options. In other instances, this was discussed in case the adolescent encountered fertility problems, even if they decided to bank sperm. Additionally, adolescents and parents sometimes referenced the moral and ethical value of providing a home for a child in need.

Discussion

As one of the first studies to qualitatively explore multiple family members’ perspectives on communication pertaining to the FP decision-making process, we have highlighted the processes by which male adolescents and their caregivers communicate about FP in the context of a new cancer diagnosis, as well as the content that comprise these conversations. Novel insights were that: 1) despite the short time frame within which FP decisions occur, many parents sought out support from extended family members and friends; 2) several adolescents perceived conversations to be comfortable and easy, whereas most mothers noted barriers; 3) about one-third of fathers and one-quarter of mothers deferred the banking decision to their sons, yet adolescents were often unengaged in discussions with the healthcare team and/or did not recall details in retrospect; and 4) in addition to the adolescent and parent preferences, there was discussion about a potential future partner’s desires for biological children.

The days surrounding a new childhood cancer diagnosis are generally filled with numerous medical tests and consultations, and fertility counseling and preservation must be completed before treatment begins.²¹ Despite these constraints, many parents reported contacting support networks (i.e., extended family, friends) for guidance, advice, and information/experiences with banking and pursuing alternative routes to parenthood. Some mothers even noted that extended family agreed to provide financial support, which was impactful considering cost is a substantial barrier to pursuing FP.²² It is also important to note that sons did not mention this form of support, further highlighting the importance of encouraging parents’ active involvement in the FP decision-making process. Although parents will sometimes seek support in the context of other medical decisions,²³ this has not been well-studied in the context of pediatric FP decisions. Healthcare providers can encourage families to utilize these support networks to overcome barriers to FP, while remaining sensitive to the fact that not all families have a large support network and that some families may choose to keep these discussions private within the immediate family system.

A surprisingly large proportion of adolescents noted that conversations about FP were easy, fine, or comfortable. However, previous literature suggests that adolescents can experience stress and embarrassment when communicating about FP²⁴ or sexual health topics with parents.²⁵ Taken together, it’s possible that adolescents may feel some embarrassment during FP conversations, but in hindsight, they often feel neutral or positive. In contrast, mothers noted the most barriers to having conversations about FP. Clinicians can put parents (especially mothers) at ease by sharing that many adolescents are open to talking about banking with parents, thereby encouraging families to normalize pre-treatment FP discussions.

Consistent with literature suggesting that parents often defer FP decisions to their son,¹⁴ several mothers and fathers, and a few adolescents, described that parents withheld their opinion about FP and deferred the banking decision to their son regardless of age. This is concerning due to possible developmental barriers in future-oriented thinking for adolescents,^14,26 which can be made more difficult in the context of a new cancer diagnosis and the associated time constraints, physical effects, and emotional strain of the situation.²¹ Furthermore, one-third of adolescents could not recall details of FP conversations with healthcare providers, and several relied on their parents to talk about FP with healthcare providers because they felt unwell^27,28 and/or awkward.²⁵ Indeed, unlike adult populations, adolescents may prefer family support over physician support when making sperm banking decisions,²⁸ and parent recommendations strongly influence these decisions.¹³ Thus, promoting parental involvement in FP decision-making processes may mitigate these potentially negative outcomes, especially for younger boys who may have more difficulty engaging in FP conversations with healthcare providers.

One barrier for mothers was the perception that males could have more natural FP conversations, which was framed more as a facilitator for fathers and adolescents. This is a potential concern since many fathers were not present for the fertility consult and instead were given information about FP through their partners or sons. The barriers and facilitators identified by participants are consistent with literature on parent–child communication regarding sexual health: both parents and children find sex-related conversations embarrassing, conversations between same-gender pairings are more fruitful, and younger child age is associated with more challenging discussions.²⁵ In a recent study, fathers’ recommendation for FP exerted three times as large an effect as mothers.¹³ Therefore, providers should make efforts to include fathers,²⁹ as well as mothers or other caregivers, in FP counseling and decisions by utilizing resources such as telephone/telehealth if unavailable in person.

Other themes pertained to the content of conversations. Several adolescents and parents acknowledged a desire for biological (grand)children. About one-third of mothers and one-quarter of fathers encouraged their sons to utilize FP as a backup plan, in case they or a future partner desire a biological child. This is an important consideration; some pediatric cancer survivors have changed their minds from not wanting children at diagnosis to desiring children later in survivorship.³⁰ Additionally, survivors across levels of infertility risk worry about how infertility will affect romantic relationships (i.e., specifically pertaining to disclosing fertility status).³¹ Therefore, healthcare providers could bring up the perspective of a potential future partner to facilitate adolescents’ future-oriented thinking.²⁶

One limitation of this study is that interviews took place 1–2 months after diagnosis at a time of great physical and psychosocial distress, and after banking decisions were made, which could impact responses. Additionally, our sample was primarily White and Christian, so further investigation into potential sociocultural differences in other racial/ethnic groups in FP communication processes is warranted. Finally, our institution had an automatic FP consult included in the new cancer diagnosis set, so it is probable the process and/or content of FP conversations would differ for families in an institution with less consistent FP consultations. Strengths include our qualitative, multi-informant approach, and use of an interdisciplinary coding team, allowing for multiple views during the coding process.

Our data show families are appreciative of FP information received from their healthcare team, and we believe that healthcare providers are well-positioned to further support family-centered decision-making processes through highlighted themes. In addition to reviewing infertility risk assessment and FP options, healthcare providers should: 1) make efforts to include both/multiple caregivers in fertility consultations; 2) facilitate shared decision-making about FP with adolescents and parents/caregivers, 3) assist in “normalizing” conversations about this topic, 4) present the idea of FP as a “plan B” to mitigate future distress for the survivor and/or potential partner, and 5) encourage families to utilize extended support networks if available. Additional strategies for making FP conversations more comfortable and impactful would be to offer one-on-one conversations with adolescents and parents separately during part of the fertility consultation to mitigate any perceived embarrassment or awkwardness, and to make efforts to include fathers/additional caregivers in the consult via telephone/telehealth. Using these strategies can help families overcome barriers to communication and ensure that adolescents are not left to make FP decisions without familial support.

When confronted with a new pediatric cancer diagnosis, families face many decisions, including the decision to utilize FP. Given the sensitivity of discussing sex-related topics generally,²⁵ FP may be more difficult to broach than other cancer-related decisions. By qualitatively exploring FP communication processes from multiple family members’ perspectives, our study expands what is known about providers’ and parents’ influences on FP decisions, which can help providers guide family communication and facilitate FP decisions from a more holistic or family-centered viewpoint. Although many families experienced relative ease in discussing and deciding about FP, several family members reported challenges or simply left the decision up to their sons. Therefore, interventions are needed at the time of diagnosis to facilitate family conversations about FP to optimize banking and decisional satisfaction throughout survivorship.

Abbreviation

FP

Fertility Preservation