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DOI: 10.1080/10410236.2020.1868065
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Fertility Preservation Decision-Making
Communication between Young Adult Cancer
Patients and Their Romantic Partners: An
Application of the DECIDE Typology
Nicholas T. Iannarino & Angela L. Palmer-Wackerly
To cite this article: Nicholas T. Iannarino & Angela L. Palmer-Wackerly (2021): Fertility
Preservation Decision-Making Communication between Young Adult Cancer Patients and Their
Romantic Partners: An Application of the DECIDE Typology, Health Communication
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HEALTH COMMUNICATION
https://doi.org/10.1080/10410236.2020.1868065
Fertility Preservation Decision-Making Communication between Young Adult Cancer
Patients and Their Romantic Partners: An Application of the DECIDE Typology
Nicholas T. Iannarino
a
and Angela L. Palmer-Wackerly
b
a
Department of Language, Culture, and Communication, University of Michigan-Dearborn; bDepartment of Communication Studies, University of
Nebraska-Lincoln
ABSTRACT
Infertility risk and fertility preservation (FP) are often salient quality-of-life concerns for young adults
(YAs; i.e., 18–39 years old) who have experienced a cancer diagnosis. However, we know little about
how members of this population communicate with close loved ones when faced with choices about
FP before beginning cancer treatment. In this study, we apply the Family Determinants of Clinical
Decisions (DECIDE) Typology to explore how YA cancer patients and their romantic partners negotiate
unique and complex decisions about fertility with one another, their parents, and other family
members. Through individual semi-structured interviews with 12 YA patient-romantic partner dyads,
we found that most (n = 8) YA couples were collaborative in their decision-making communication,
but that they varied in the extent to which they valued family involvement (i.e., open-, filtered-, and
closed-collaborative). Other YA patients were independent and did not involve any partners or family
members in decision-making, or they exemplified incongruent decision-making styles between the
involved parties. Our findings have multiple implications for decision-making theory and practice in
both cancer and FP communication.
The National Cancer Institute has classified young adults (YAs;
i.e., 18–39 years old) living with cancer as a unique group that
experiences age-distinct psychosocial and support needs
(Adolescent and Young Adult Oncology Progress Review
Group [AYAOPRG], 2006). One major concern is that cancer
and treatments like chemotherapy can lead to male and female
infertility (Oktay et al., 2018). Because YAs living with cancer
are at a life stage in which forming and maintaining intimate
relationships and family planning is the norm, infertility risk
and fertility preservation (FP) are often salient quality-of-life
concerns (Flink, Sheeder et al., 2017). Fertility is linked to YAs’
identity and sense of wellbeing, regardless of whether they are
actively contemplating future parenthood (Crawshaw &
Sloper, 2010). Many YA patients who are childless at diagnosis
say they want to have future offspring (Schover, 2009), would
prefer to become parents biologically (Lee et al., 2006), and
experience anxiety about potential cancer-related infertility
(Benedict et al., 2020).
It is often possible to preserve YA patients’ fertility before
initiating cancer treatment. Sperm and egg freezing are the
most established, effective, and widely-available options of FP
(Loren et al., 2013). However, utilization rates of FP procedures
range from only 4% to 49% in cancer patients (Flink, Sheeder,
et al., 2017). At the same time, YAs who experience infertility
after treatment have reported long-term distress, remorse, and
lower self-esteem and quality of life, particularly when they did
not discuss FP options with clinicians before beginning cancer
treatment (Levine et al., 2010). YAs have also reported
CONTACT Nicholas T. Iannarino
iannarnt@umich.edu
Building, 4901 Evergreen Road, Dearborn, MI 48128, USA
© 2021 Taylor & Francis Group, LLC
difficulty receiving helpful support from parents and romantic
partners, whose existing support duties and domains can shift
dramatically following a cancer diagnosis (Iannarino, 2018a).
In this exploratory study, we apply the Family Determinants
of Clinical Decisions (DECIDE) typology (Krieger, 2014) to
explore how YA cancer patients and their romantic partners
negotiate unique and complex decisions about FP with one
another, their parents, and other family members. These deci­
sions can be challenging because YAs are often diagnosed at
a life-stage in which romantic relationships are tenuous and
roles within their families of origin are shifting (e.g., as YAs
seek to establish more independence and privacy from parents;
Iannarino et al., 2017). Additionally, because cancer in patients
of childbearing age is comparatively rare, current health care
provider (HCP) training programs, and the medical system as
a whole, do not sufficiently address YA-specific psychosocial
concerns in oncology care (Shay et al., 2017). The current study
seeks to fill this gap by exploring the shared decision-making
styles of YA patients, partners, parents, and other family mem­
bers regarding FP before beginning cancer treatment.
Fertility decision-making in YA cancer
Several factors have been shown to explain YA cancer
patients’ low FP utilization rates. While YAs have expressed
the importance of having conversations with HCPs about
infertility risk and FP options at or around diagnosis
(Gorman et al., 2012), most YAs are unlikely to initiate
these discussions themselves (Loren et al., 2013). Not only
Department of Language, Culture, and Communication, University of Michigan-Dearborn, 3036 CASL
2
N. T. IANNARINO AND A. L. PALMER-WACKERLY
are YAs understandably more focused on their cancer diag­
nosis, but some YAs struggle with the decision to pursue FP
interventions because they have not yet considered their
potential for parenting (Chapple et al., 2007). Many YA
patients do not possess much prior awareness of infertility
as a possible side effect of cancer or knowledge of available FP
treatments (e.g., Johnson et al., 2018), and some insurance
companies do not cover FP and assisted reproductive techni­
ques (Loren et al., 2013). Thus, YA patients who perceive they
cannot afford FP services, lack helpful family support, and are
focused exclusively on their cancer diagnosis and beginning
treatment as quickly as possible are less likely to pursue FP
options (Flink, Sheeder, et al., 2017).
While many YAs are initially ambivalent about their poten­
tial to parent, some passively agree to engage in FP simply
because the topic was raised by an HCP (Crawshaw et al.,
2009). Others later regret their decision not to pursue FP and
express uncertainty about their ability to reproduce following
treatment completion (Flink, Kondapalli, et al., 2017). In many
cases, without HCP involvement, YAs and their loved ones
might not consider infertility risk alongside the whirlwind of
cancer diagnosis, prognosis, and set treatment regimen
(Johnson et al., 2018).
Romantic partner and family member involvement in YA
FP decision-making
While HCPs are important to YA FP decisions, the role of
romantic partners, parents, and other family members in this
decision-making process is not well understood. In one study,
YAs and their partners reported satisfaction with their par­
ents’ sometimes-unsolicited reminders that they should ask
HCPs about their infertility risk and FP options (Iannarino,
2018a). However, most existing literature on third-party
involvement in these decisions focuses on adolescent pedia­
tric patients whose parents are legal guardians with decisionmaking autonomy. Adolescents have reported that a parent’s
involvement helped them cope with information about infer­
tility risk alongside news of their cancer diagnosis. In some
cases, mothers successfully encouraged patients to reconsider
their ambivalence about pursuing FP. Adolescent patients
were also more likely to be satisfied with their parent’s pre­
sence during appointments when HCPs spoke directly to the
patient about fertility matters rather than to, or through, the
parent (Crawshaw et al., 2009). Although family involvement
can be beneficial, it can also cause adolescents to feel pres­
sured by parents who disagree with their FP decision
(Vindrola-Padros et al., 2017). HCPs might also be less likely
to initiate infertility risk and FP discussions with parents
present because they are afraid that talking about the adoles­
cent’s sexual practices will be awkward for all involved, and
because they do not want to place additional burden on
parents so soon after their child’s diagnosis (Quinn et al.,
2009).
Additionally, YAs can be distinct from older and younger
cancer patients as they begin to consider a future with
a significant other while also simultaneously working to estab­
lish more independence from parents. Partners’ family system
uncertainty about where they “fit” within the patient’s larger
support network (Mikucki-Enyart et al., 2015) can prevent
partners from feeling like they have a say in the patient’s FP
decisions. This is particularly true when the patient’s parent(s)
have worked to remain “in charge” of the patient’s care, and
partners must decide whether they want to compete with the
patient’s parent(s) to claim ownership of this primary support
role (Iannarino, 2018a). Potential infertility can also cause YAs
to feel uncertainty about dating, concern that their existing
partner would choose not to participate in a procedure to
facilitate pregnancy, and fear that they would no longer want
to stay in the relationship (Gorman et al., 2012).
Overall, our understanding of how YA cancer patients and
their partners, parents, and other family members communi­
cate during FP decision-making is currently limited. When
fertility issues among YAs undergoing cancer treatment have
been discussed in health communication research, focus has
been placed on the uncertainty and stress YA patients experi­
ence when faced with infertility risk and FP decisions
(Donovan et al., 2015; Iannarino, 2018b; Miller, 2015) and
the role HCPs can play in female YA survivors’ decisions
related to family-building post-treatment (Benedict et al.,
2020). Though FP has been explored more extensively in YA
psycho-oncology studies (e.g., Kim et al., 2016), the messages
involved in these decisions have not been closely examined,
particularly from a communication theory perspective.
Additionally, while much of this previous literature has studied
YA survivors of pediatric cancers (e.g., Johnson et al., 2018),
the current exploratory study fills a gap in extant research by
more closely examining the FP decision-making communica­
tion of participants who experienced the unique disruption of
cancer diagnosis as a YA – both from the perspectives of YA
patients and their romantic partners.
The family determinants of clinical decision-making
(DECIDE) typology
To help in our examination of FP messages in the cancer treat­
ment decision-making context, we use the DECIDE Typology
(Krieger, 2014). This typology was created as a conceptual fra­
mework for understanding how and why patients and family
caregivers perceive their identities and roles when making cancer
treatment decisions (Krieger et al., 2015). The typology consists
of two axes – patient and caregiver illness identity – with each
axis beginning with personal identity and ending with relational
identity. The intersection of these axes creates five family deci­
sion-making styles based on patient and caregiver illness iden­
tity: (1) independent, where both patient and family perceive the
decision as belonging to patient, instead of family; (2) collabora­
tive, where both patient and family perceive the decision as
shared between patient and family; (3) delegated, where both
patient and family perceive the decision as belonging to family,
instead of patient; (4) isolated, where patient perceives the deci­
sion as being shared with family, but family perceives the deci­
sion as belonging to patient; and (5) demanding, where family
inserts themselves into the decision-making process when
patient does not want their involvement (Krieger et al., 2015).
To our knowledge, the current study is the first to use
communication theory to consider the decision-making style
of YA patients, romantic partners, parents, and other family
HEALTH COMMUNICATION
members in YA cancer treatment-related FP decision-making.
We use DECIDE to explore how YA cancer patients and their
romantic partners describe conversations about infertility risk
and FP decisions with each other and with their parents and
other family members following a cancer diagnosis. We
describe what these discussions look like, whether participants
are satisfied with the conversations, and who initiates involve­
ment. In other words, we examine whether YAs actively choose
to involve these individuals as shared decision makers, if
involvement is unsolicited, and if involvement is congruent
or incongruent with the YA patient, partner, and couple’s
wishes. By applying DECIDE (Krieger, 2014), the current
study could improve YA patient, partner, and family wellbeing
by helping them (prepare to) communicate more effectively
about infertility risk and FP options during an unexpected and
stressful time. Thus, our research question is:
RQ: What DECIDE decision-making styles do YA cancer patients
and their romantic partners describe in pre-treatment fertility
preservation decision-making conversations with one another,
their parents, and with other family members?
Method
Participants
The first author conducted individual, face-to-face interviews
with 12 YA cancer survivors (i.e., men and women currently
between the ages of 18 and 39 who were diagnosed with cancer
and have completed primary treatment within this age range)
and their YA romantic partner (N = 24). See Table 1 for
participant demographics.
These interviews were conducted as part of a larger project
involving YA survivors and a close support network member.
Following institutional review board approval (IRB #13-0739P4S), the first author engaged in convenience, volunteer, and
snowball sampling. Recruitment messages were delivered
through in-person announcements at YA cancer support
groups, referrals from psychosocial oncology services at non­
profit organizations and university hospitals, posts on cancer
support organizations’ social media pages, fliers at two large
universities and in the surrounding communities, and referrals
from other participants. To participate, YA survivors needed to
be between the ages of 18 and 39 at initial cancer diagnosis,
primary treatment completion, and interview. Supporters
needed to consider themselves a close supporter of the YA
survivor at diagnosis and during primary treatment.
Participants could also enroll individually without the partici­
pation of their YA survivor or close supporter loved one. In the
larger project, the first author enrolled 21 dyads, 1 triad (i.e.,
a YA survivor, his spouse, and his mother), 9 individual YA
survivors, and 8 individual supporters. In the present study, we
sought to understand how YA survivors and their romantic
partners communicated about FP decisions; thus, we examined
the 12 YA survivor-partner dyads included in our sample.
Procedure
All interviews were conducted face-to-face with the first author
at a time and place convenient for the participant. Participants
provided written informed consent, completed a short demo­
graphic questionnaire, and engaged in separate semistructured interviews (Lindlof & Taylor, 2019) to more freely
discuss sensitive information without the impression manage­
ment effects that can occur when interviewing pairs together.
Dyadic interviewing also enabled the researchers to rely on
individual accounts to construct a joint picture of pairs’ com­
mon experience (Eisikovits & Koren, 2010). Interview ques­
tions focused on how YA survivors and their closest supporters
described their own and others’ interpersonal communication
practices (e.g., decision-making, identity management, social
support) related to their cancer experiences. Fertility-specific
questions were designed to elicit examples and evaluations of
how YA patients and their supporters discussed or did not
discuss decisions related to infertility risk and FP following
a cancer diagnosis (i.e., “Did your/your partner’s medical pro­
viders ever discuss anything related to the risk of infertility?”,
“Can you tell me about a decision you and/or your partner
made about preserving your fertility?”, and “Did you and/or
your partner ever talk with someone other than your partner
and your/their medical providers about fertility concerns?”).
Interviews lasted an average of 72 minutes. Each participant
was assigned a pseudonym and given a 15 USD gift card upon
completion.
Table 1. Participant demographics.
Romantic Partner (n = 12)
26.4 years (range = 18–37)
7 females (58.3%)
5 males (41.7%)
Race
White (n = 10)
Black/African American (n = 1)
Hispanic/Latino (n = 1)
YA patient initial diagnosis
Leukemia (n = 4), testicular (n = 3), breast (n = 2), mediastinal (n = 1), ovarian/
uterine (n = 1), head/neck (n = 1)
At interview, avg. time since primary treatment completion
3.2 years (range = 1 week–12.5 years)
Secondary malignancy or recurrence following primary treatment completion No (n = 8, 66.7%) Yes (n = 4, 33.3%)
Romantic partner relationship to patient at interview
Wife (n = 6), husband (n = 3), boyfriend (n = 2), girlfriend (n = 1); among the 9
currently married dyads, 4 were dating, 3 were engaged, and 2 were married at
diagnosis
State of residence
OH (n = 16), KY (n = 4), IN (n = 2), MD (n = 2)
Dyads with children at interview
One biological child (n = 3) No children (n = 9)
Avg. age at diagnosis
Gender
3
YA Cancer Patient (n = 12)
25.9 years (range = 19–36)
7 males (58.3%)
5 females (41.7%)
White (n = 11)
Black/African American (n = 1)
4
N. T. IANNARINO AND A. L. PALMER-WACKERLY
Data analysis
Participant and partner interviews were transcribed and exam­
ined in their entirety by both authors through dyadic analysis
(Eisikovits & Koren, 2010) and thematic analysis of the data
across two cycles: initial/open and focused coding (Charmaz,
2014). Within initial coding, we familiarized ourselves with the
interview transcripts by (re)reading each survivor participant’s
responses sequentially with their partner’s to search for the­
matic overlaps and contrasts between each dyadic member’s
individual experiences. Dyadic analysis enhanced our under­
standing of the partners’ relationship and helped us develop
a third perspective constituting a joint picture or shared nar­
rative of this experience (Eisikovits & Koren, 2010). We then
engaged in descriptive, open coding to identify and label any
components, ranging from a few words to several paragraphs,
that related to dyads’ conversations about FP decisions across
entire transcripts. During this stage, we met every one-to-two
weeks to categorize emergent data into themes, and we began
to recognize Krieger’s (2014) family DECIDE types in the data.
We then moved to focused coding, in which we created one
codebook and continued to meet every one-to-two weeks to
code all data according to DECIDE’s a priori concepts while
also allowing new insights to emerge. During and after focused
coding, we discussed the relationships between the identified
themes, refining labels and creating a more complete picture of
our data, which included how and why participants clustered
into certain themes. Through detailed conversation across each
data analysis cycle, both authors refined the specific descriptive
codes within each theme, discussed discrepancies, and reached
consensus regarding the consistency of the themes (Saldaña,
2013). No new categories emerged at this stage, which suggests
theoretical saturation was achieved (Lindlof & Taylor, 2019).
Findings
Findings revealed that couples’ conversations regarding FP
decisions were distinct depending on the degree to which
others were involved. Participants reported that most of their
FP conversations originated during or around the time of the
YA patient’s pre-treatment consultations with HCPs. Findings
indicated that YA patients and partners varied in their degree
of FP decision-making communication with each other, their
parents, and other family members, ranging from very little to
very involved discussion.
More specifically, 3 patients were independent (i.e., both
patients and partners believed the FP decision belonged to
the patient) and did not involve any family members in FP
decision-making. While we classified 8 couples as collaborative
(i.e., both patients and partners believed the FP decision
belonged to the patient and family), we created 3 new colla­
borative sub-styles – closed-collaborative (n = 5), opencollaborative (n = 2), and filtered-collaborative (n = 1) – to
more closely reflect the nuanced communication styles
between couples and other family members we identified in
our data. Finally, 1 couple was incongruent in how they per­
ceived one another’s decision-making. The patient believed FP
decisions belonged to him and his parents (i.e., collaborative),
while his partner believed it also belonged to her (i.e.,
demanding), and while the partner also dealt with unwanted
involvement from the patient’s parents (i.e., demanding). Thus,
all but one couple in our sample were congruent in how they
perceived the FP decision-making styles of the patient and their
partner, parents, and other family members. See Figure 1 for a
visual representation of these findings.
Congruent independent YA couples (n = 3 dyads)
Couples in this decision-making style were composed of female
patients and male partners who were unmarried at diagnosis.
Even though FP outcomes could eventually affect both partners
equally, female patients in this style demonstrated complete
ownership over these decisions in discussions with HCPs,
while supportive male partners acted more as witnesses, believ­
ing that FP decisions belonged solely to the patient. By agreeing
that the patient had ultimate authority over FP decisions, these
dyads exemplified an independent decision-making style.
Following her breast cancer diagnosis at 29, Selina decided to
preserve her fertility to fulfill a need for control within the
larger sea of uncertainty accompanying cancer:
Cancer takes away a lot. A lot of that is your freedom of choice.
And I think as soon as [my fertility] was called into question, even
though I still don’t know [if I want kids], the idea that I might not
have had the choice to make that decision caused me to think about
it a lot more than if I didn’t have cancer.
Meanwhile, Selina’s boyfriend Sam seemed to support her sole
ownership of this decision by describing FP as happening
within her body to give her the best possible chance of having
kids:
She harvested her eggs because there was a chance she wouldn’t
come out of chemo able to have children. Her doctor has already
said it’s not a 100 percent guarantee, but she’s definitely on the
better side for being able to have kids if she wants.
Charlotte also did not mention her boyfriend Geoff’s involve­
ment when describing her conversations with HCPs about
harvesting her eggs after being diagnosed with leukemia at
23. Geoff also did not express ownership or involvement in
the interactions at this stage, and he indicated that he viewed
FP as Charlotte’s decision:
Charlotte brought it up [to her doctors] the day after she got
diagnosed. She’s like that. She thinks of everything. She was like,
“Do I need to freeze my eggs?” And [her hematologist] said, “Sorry,
we don’t have time. We need to start you on chemo.”
Thus, these couples reported that female patients and their
boyfriends were aligned in the patients’ enactment of an inde­
pendent decision-making style, believing that the patient solely
owned these FP decisions.
Congruent collaborative YA couples (n = 8 dyads)
Eight couples reported that they enacted one of three new
collaborative decision-making sub-styles with each another
and sometimes with other family members when discuss­
ing FP.
HEALTH COMMUNICATION
5
Fertility Preservation Decision-Making Styles
Congruent Independent YA Couples (n = 3 dyads)
Patient and partner perceived that patient had sole responsibility in the FP decision.
Patient
Partner
Congruent Collaborative YA Couples (n = 8 dyads)
Closed-Collaborative (n = 5 dyads)
Patient and partner perceived that only they would share responsibility in the FP decision. One
couple described having demanding parents who wanted to know more about their FP decision.
Patient
Partner
Patient
Partner
Patient’s
Family
Partner’s
Family
Open-Collaborative (n = 2 dyads)
Patient and partner perceived that parents and other family members shared responsibility in the
FP decision.
Partner
Patient
Partner’s
Family
Partner
Patient
Patient’s
Mom
Figure 1. Fertility preservation decision-making styles.
Closed-collaborative YA Couples (n = 5 dyads)
Five couples reported that the patient’s conversations about FP
decisions included their partner (i.e., 3 girlfriends, 1 husband, and
1 wife at cancer diagnosis) without including other family mem­
bers. These couples exemplified the collaborative decision-making
style by sharing cognitive and emotional ownership of FP options
between only themselves (e.g., “We didn’t bank sperm”; “We
weren’t too worried about it”). Brad, who was diagnosed with
testicular cancer at 22, said his decision to bank sperm before
treatment was not difficult, and that his HCP highly recommended
he do it. Despite he and his girlfriend’s lack of clarity about their
future relational goals (including whether they wanted to have
children), Brad said they “wanted the option [to conceive] if it
came down to that.” Brad’s girlfriend (now wife) Carrie explained
that the couple’s young age and new relational status caused their
shared FP conversations to feel surreal: “[Brad’s doctor] talked to
him about banking sperm, which was kind of crazy for us because
we were thinking, ‘Uh, we just got engaged, but we really do need
to think about our future, so this is very smart.’”
Another closed-collaborative couple also believed their FP
decisions should be shared only between them, but they also
experienced a demanding style when the patient’s parents
attempted to share ownership of FP decisions by overstepping
boundaries, “barging in” at inopportune times, and discovering
information the couple did not want them to know. Tim and
his wife Sydney experienced stress during FP conversations
because family members were present in the room when
HCPs discussed information the couple considered private.
Immediately following his leukemia diagnosis at 28, Tim was
placed into a medically-induced coma to reduce brain swelling.
As a result, he and Sydney did not have an opportunity to bank
sperm before beginning treatment. HCPs explained to Tim
after he regained consciousness that he might not be able to
have children, which Sydney said was “still hard” and “really
emotional” to consider. Sydney was especially frustrated that
HCPs did not keep this information between the couple, parti­
cularly because the couple’s parents learned about it before
she did:
6
N. T. IANNARINO AND A. L. PALMER-WACKERLY
Filtered-Collaborative (n = 1 dyad)
Patient and partner perceived that only certain extended family members shared responsibility in
the FP decision. Thus, this couple experienced one collaborative and one demanding family
member.
Patient
Partner
Patient’s
Mom
Patient’s
Sister
Incongruent Couple and Family (n = 1 dyad)
Patient and partner differed in their perceptions of the couple’s decision-making styles
(independent vs. demanding); however, the partner perceived that they evolved to a collaborative
decision-making style (the patient did not mention their evolution) while perceiving the patient’s
parents’ decision-making styles differently (collaborative vs. demanding).
Initial Patient Perspective
Patient
Partner
Initial Partner Perspective
Patient
Partner
Evolved to:
Patient
Partner
Patient’s
Parents
Figure 1. (continued).
The nurse came in the room and just like blurted it out in front of
our parents. And when Tim told me later, I was like, “Great. Now
they know what he’s telling me. And they’re gonna wonder how
I’m gonna react when I walk out of the room.” So that was rough.
Tim said his family later “wanted more details than we were
wanting to give about the reproductive consequences of what
I was dealing with.” Thus, Tim and Sydney were collaborative
in their decision-making as a couple, but they did not want to
involve their parents, who were, perhaps unintentionally,
already involved in the conversation by a nurse.
Open-collaborative YA couples (n = 2 dyads)
Two couples described their open-collaborative decisionmaking style when mentioning several family members who
reminded the couple to ask providers about FP. In these cases,
the YA couples appreciated their family members’ involve­
ment, sometimes from both partners’ families. Following his
mediastinal cancer diagnosis at 25, Riley said he and his fiancée
(now wife) Abby decided to freeze sperm because his doctors
told them that his treatment “affects everyone differently. They
don’t think there’ll be a problem, but there was no way of
knowing. So as a precautionary measure we did that.” Abby
agreed that the couple did not feel comfortable starting che­
motherapy without first banking sperm:
[Riley’s doctors said] “There’s a chance he could have issues later.
Most people don’t, but there’s a chance.” So when he and I talked
about it, we were both like, “We would hate to wing it and then
have problems when we could do something about it.”
In addition to their HCPs’ recommendations, Abby appre­
ciated several of her family members’ polite suggestions that
the couple think about FP:
Initially, we had so many questions. But one of my biggest things,
because I’ve always wanted a big family, was how it was gonna
affect us being able to have kids. I got to talk to some of my family
while we were first in the hospital, and they were the ones that were
like, “Hate to—I know there’s a lot going on, but did you think
about this?”
Abby and Riley perceived family involvement as helpful to
their FP decision-making. Perhaps because their family
initiated the conversation with sensitivity, the couple was able
to process their future goals with trusted individuals during
a time of uncertainty and chaos.
HEALTH COMMUNICATION
Another couple eventually demonstrated the opencollaborative style, but they first attributed FP styles to the
other partner without directly communicating these prefer­
ences to each other. When Kevin was diagnosed with thyroid
cancer at 19, he said that he thought his girlfriend Carolyn and
his mother were both equally “worried” about his infertility
risk. However, Carolyn said she was not even aware that they
should be considering FP until Kevin’s mother raised the issue
with doctors. Carolyn described Kevin’s embarrassment when
his mother asked his HCP about FP before he began radio­
active iodine treatment:
I remember his mom saying, “Is this something where we need to
preserve him so that they can still have kids?” And Kevin just bust
out laughing, like, “Mom, stop.” And the doctor was like, “No,
that’s gonna be okay. That’s not gonna be a problem.” And she was
like, “I was just wantin’ to make sure, cuz I definitely wanna have
grandkids.”
Even though the couple decided not to bank Kevin’s sperm,
Carolyn acknowledged that neither she nor Kevin would have
been concerned about sperm banking without his mother’s
collaborative influence, and thus they ultimately appreciated
it. Carolyn also mentioned that the couple did not initially
understand that FP decision-making was needed, and that
future FP decisions should still involve Carolyn:
It floored me. I was like, “That is not somethin’ I thought about.” It
was crazy. I didn’t think about anything that far down the road.
Obviously, I was carin’ about what would happen to Kevin, but
I just felt like everything was temporary. So the surgery’s gonna be
over, and then everything’s gonna be back to normal. And
obviously everything ended up bein’ okay, but [losing fertility]
was something I didn’t even think could happen.
At 18 years old, Carolyn was forced to cope with a sudden
realization about fertility that most people do not consider
until later in life. While Carolyn was physically present in FP
conversations with Kevin’s mother and his HCP, the complex­
ity, rapid changes, and sudden disruptions associated with
a YA cancer diagnosis can unearth topics from other collabora­
tive partners (e.g., mother) that otherwise-involved YA parti­
cipants have not actively considered.
Filtered-collaborative YA couple (n = 1)
Another patient, Stella, described her use of a filteredcollaborative style when explaining how she wanted to only
discuss FP with her fiancé (now husband) Dave and her
mother. Despite their wishes, Stella’s sister exhibited
a demanding style by also pushing to be involved. Stella was
undergoing a breast lumpectomy at 31, and she described the
incongruent family FP decision-making communication
occurring at that time:
My mom and Dave had been [at the hospital] all day waiting with
me. They were talking to the doctor and my sister comes barging in
like a hurricane and was like, “But can she have kids?!” Just like
starts throwing all these questions out. And Dave is like, “Shut up!”
While Stella perceived Dave and her mom as collaborative
partners in her decision-making, she and Dave viewed her
sister as unhelpful in processing information and intensifying
emotions during an already stressful time; thus, we categorized
this couple as filtered-collaborative because the couple was
7
collaborative with each other and Stella’s mother in their FP
decision-making, while not wanting input from certain other
family members.
Incongruent (independent versus demanding) YA couple
and family (n = 1)
We identified 1 couple as exemplifying a conflicting decisionmaking style, where one partner viewed the decision-making
style differently than the other. This couple experienced
explicit disagreement over decision-making styles and
responsibilities that they negotiated over time. Kiki and her
boyfriend (now husband) Gunther’s narratives following his
testicular cancer diagnosis at 25 are exemplars of how the FP
decision-making process can be fluid, unfolding over a series
of at least three conversations and involving multiple stake­
holders. Kiki said that their decision to bank Gunther’s sperm
was almost taken for granted because “It was so recom­
mended [by his HCPs] that it’s what you do. There’s no,
‘Maybe we should think about something else.’ Like, no.”
While Kiki viewed FP as an automatic part of his treatment
plan, her conversations with Gunther about banking sperm
“before we were even engaged” were fraught with tension.
During these discussions, Kiki exhibited a demanding style
because she wanted to talk to Gunther about how his FP
would later affect her own potential fertility treatments.
However, Gunther exhibited an independent style because
he only wanted to talk about what was happening to him
and his body:
We actually had a big bout over this because it was relatively easy
for him to [decide to bank sperm]. But for me to think, “Oh,
someday we’re gonna have to do in vitro or something,”
I remember it being one of the things that I came home and just
cried about, like “I have to decide this now? And then I have to do
something I feel is unnatural?” I don’t think that’s the right way to
have a baby, and I didn’t wanna go through all that. I actually said
something like, “I don’t wanna have all those needles and every­
thing.” This was before chemo had started, but he completely went
off on me about how I shouldn’t be such a baby and how he’s gonna
have to go through all this stuff. And I realized it was because he
was upset about having to go through chemo, but he took it all out
on me.
Because he viewed cancer as primarily affecting his body (i.e.,
independent) and not involving Kiki, Gunther withdrew from
conversations in which Kiki wanted to talk about the FP
decisions she felt they shared (i.e., demanding). Gunther also
referenced this conflict with Kiki, but he attributed it to his
nerves about starting chemotherapy rather than her uncer­
tainty about sperm banking or in vitro fertilization. While the
couple initially had trouble deciding about FP, Kiki explained
that Gunther eventually decided both to bank sperm and
include her name in its legal co-ownership, which were actions
that validated their relationship and eventually exemplified
collaborative decision-making: “He actually signed it over to
me if anything does happen to him. Even though we weren’t
married yet, he did put me down as the person who would get
[the sperm] if something happened.”
Though Kiki perceived that the couple evolved to
a collaborative decision-making style, they were also incongru­
ent in their perception of Gunther’s parents’ styles and
8
N. T. IANNARINO AND A. L. PALMER-WACKERLY
responsibilities in their FP decision-making. While Gunther
did not seem to have an issue with his parents’ recommenda­
tions that he bank sperm (i.e., collaborative), Kiki described
Gunther’s parents as inserting themselves into and violating
perceived boundaries surrounding the couple’s FP decisionmaking (i.e., demanding). Kiki was not surprised that
Gunther’s parents suggested he bank sperm before treatment
began: “I think they strongly encouraged he do it . . . I mean,
everyone knows how his family is with wanting sons.” She also
expressed frustration at Gunther’s mother’s presence during
a sensitive conversation with an HCP who warned the couple
that conceiving during chemotherapy could cause negative
effects to a fetus:
Well, the fun part was that it was me, and Gunther, and his mom
with this lady. And birth control came up, which was a super fun
topic to talk about in front of his mother. You have to have like five
different forms of birth control just to make sure [you don’t get
pregnant], and I was on the pill, but they were like, “You’ll have to
do this, and this, and this, and this,” which again is just really fun to
talk about in front of his mom.
Thus, while the majority of couples (n = 11) were congruent in
their FP decision-making styles, the specific decision-making
styles that YA couples described depended on the responsibil­
ities they desired to share with each another and other family
members.
Discussion
To our knowledge, this exploratory study is the first to provide
insight from a communication theory perspective in describing
how YA cancer patients and their romantic partners commu­
nicate during FP decisions. Our findings have implications for
decision-making theory and practice in cancer and FP
communication.
Theoretical implications
Our findings extend the DECIDE typology (Krieger, 2014) in
two key ways: (1) by examining a new decision-making context
(i.e., FP in YA cancer) and (2) by further delineating collabora­
tive decision-making into three new types (i.e., closed-, filtered-,
open-). Our study is also the first to use DECIDE to illustrate
the complexity of FP decision-making that can arise between
YA patients and partners, and their perceptions of their par­
ents’ and family members’ involvement, all of whom can per­
ceive ownership of these decisions due to the developmentally
turbulent and socially complex life-stage of young adulthood
(Iannarino, 2018a). Whereas DECIDE has been used to exam­
ine mostly older adults who experience cancer later in life after
romantic partnerships and social support circles are often
better established (e.g., Krieger et al., 2015), YA cancer patients
have unique support stressors due to their comparatively new
careers, student loan debt, geographic relocations, desire to
become more independent from families of origin, and
attempts to begin new relationships (Adolescent and Young
Adult Oncology Progress Review Group [AYAOPRG], 2006).
Additionally, before a cancer diagnosis, many YA patients and
their romantic partners are at a life stage in which fertility is not
yet pressing. Not only were they not expecting to have to make
any immediate decisions about future parentage, these YAs
likely had not faced any decisions of this general magnitude
to this point in their lives (Perez et al., 2020). These factors can
make YA FP decision-making more difficult, but potentially
more relationship-affirming.
YA cancer and FP communication: A new decision-making
context
In our study, YA patient-partner dyads exemplified congruent
(i.e., independent, collaborative) and incongruent (i.e., indepen­
dent, demanding, collaborative) family decision-making styles
during their conversations about FP. Unlike other studies with
samples that included older adults (e.g., Krieger et al., 2015), no
YA couples in our study described delegated or isolated family
decision-making styles. This finding could be due to our small
sample of YA dyads, but it could also be because general cancer
treatment decision-making can be experientially different from
FP decision-making, which can involve a shared parenting
identity (Steuber & Solomon, 2011) that lends itself to more
shared decision-making involvement between partners. Also
unlike previous DECIDE research, participants did not indi­
cate that partners, regardless of gender, directly raised concerns
about infertility risk and FP with HCPs on their own.
Combined, these findings suggest that YA partners, although
often unprepared for cancer FP decisions, are willing to engage
in FP conversations with YA patients and also communicate
their support for them, while not explicitly raising the topic
with HCPs.
While existing literature highlights the turbulence inherent
in nascent relationships undergoing the stress of a YA cancer
diagnosis (e.g., Gorman et al., 2012), the majority (n = 8) of YA
couples in the current study maintained a collaborative style of
mutual involvement and ownership over decisions related to
FP. Status and length of romantic relationship as well as age
could be influential factors. Of the 8 collaborative couples in
this study, 2 were engaged and 2 were married at diagnosis, and
7 of the 8 couples were married at interview. Conversely, the 3
couples in this study who described an independent family
decision-making style were all in early dating stages at diag­
nosis. While independent couples in our study had been
together an average of 13.7 months (range = 1–24 months)
before diagnosis, collaborative couples’ relationship length
averaged 47 months (range = 24–110 months). Collaborative
participants were also slightly older (M = 26.8 years old,
range = 18–37) than independent participants (M = 24.7 years
old, range = 20–29). Due to the more established nature of their
relationships, collaborative partners likely felt more biographi­
cal interdependence with one another (i.e., the importance
one’s actions have on another’s present and future biography;
Iannarino, 2018a) in comparison with independent couples,
thus enabling YAs and their partners to feel more comfortable
and motivated to discuss fertility as a “shared” decision.
Gender also appeared to be a factor in FP styles adopted by
YA couples. All independent couples had female patients and
male partners who served more as supportive witnesses to FP
decisions they perceived as entirely the patient’s choice. Due to
the comparative complexity, cost, and time commitment
necessary for female FP procedures (Benedict et al., 2020),
female participants in our study – regardless of whether they
HEALTH COMMUNICATION
were patients or partners – were inherently more involved in
FP decision-making than their male counterparts as indepen­
dent patients, demanding partners, or collaborative patients
and partners. Perhaps in part because men only need to
undergo a FP procedure (i.e., sperm banking) that is compara­
tively not as invasive, complex, expensive, or time consuming
(Crawshaw & Sloper, 2010), males often understood FP to be “a
check in the box,” a routine decision of their cancer treatment,
or a simple process they might have to consider if their female
partner eventually needs assisted reproductive technology to
conceive following cancer treatment. Additionally, on
a broader social discourse level, male partners often see female
FP and contraception as entirely a female partner’s choice.
When fertility is potential, yet unrealized, it seems to fall within
the domain of female agency. However, when it is actualized
(in the case of pregnancy or abortion), male governance over
the female reproductive body can become more pronounced
(Martin, 1991). Regardless, the current study could help future
YA patients and their romantic partners have more effective FP
decision-making discussions by preparing them for the possi­
ble patterns and variability seen here.
Finally, FP decision-making between YA cancer patients
and partners can be a fluid process that unfolds over time
(Fisher et al., 2018). Perhaps because of the relatively short
time YA patients have to make FP decisions, we identified only
one couple in our data who evolved in their FP decisionmaking style. Gunther and Kiki, who were younger (25 years
old) and had been romantically involved for less time
(36 months) than the collaborative couples on average in our
sample, initially began FP conversations with incongruent (i.e.,
independent and demanding) styles. Yet, through continued
communication and perspective-taking (even with high con­
flict), Kiki perceived that they eventually reached
a collaborative style in which both partners wanted the other’s
involvement. Like other couples in our sample, Gunther and
Kiki felt their shared involvement in their final FP decision
reinforced their commitment to the relationship. Researchers
should continue to investigate how YA FP decision-making
styles can evolve across the cancer trajectory, and what factors
are helpful in enabling conflicting couples to make shared
decisions over time.
Parent and family member involvement in YA FP
decision-making
We found that YA couples applied boundaries to collaborative
decision-making differently in closed-, filtered-, and opencollaborative styles. Open-collaborative couples discussed FP
decisions with parents and other family members who helped
make infertility risk and FP options salient to participants
without “barging in,” overstepping their boundaries, or pre­
senting information insensitively. The 2 open-collaborative
couples in the current study had been romantically involved
for an average of 80.5 months (range = 51–110 months) before
diagnosis and both included male YA patients (i.e., who neces­
sitated comparatively less complicated FP intervention than
female patients). Because these couples had more time to
establish boundaries and reduce family system uncertainty
about how to navigate communication within the YA patient’s
larger support network, it makes sense that these YA couples,
9
their parents, and other family members were more likely to
approach FP decision-making together effectively. Conversely,
demanding family members, who were described in closed- and
filtered-collaborative couples, pushed for involvement in FP
decisions despite expressed resistance from YA couples. The
5 closed-collaborative couples had been romantically involved
for an average of 44.5 months (range = 24–56 months) and
included 4 males and 1 female YA patient. The 1 filteredcollaborative couple had been together for 38 months and
included 1 female YA patient. Our data could suggest that the
longer the couple has been in a relationship, the more open
they might be in their collaboration with family members.
Researchers should continue investigating factors (e.g., age,
gender, relational length) that can predict which DECIDE
styles are adopted by YA patients, their partners, and other
family members. They should also investigate relational factors
(e.g., confrontation efficacy, perceived closeness, relational
uncertainty) that could affect YA FP decisions and the privacy
management strategies used by YA patients and their partners
to enact rules and negotiate boundaries around FP decisions
(e.g., Steuber & Solomon, 2011).
Whether boundaries were open or not, participants per­
ceived parents and other family members as collaborative and
demanding in their decision-making involvement, and they
made it clear to participants that they were concerned about
the YA patient’s infertility risk and preferred that they consider
FP. However, all of the independent patients and partners, and
4 of the 5 closed-collaborative couples, did not mention any
other family involvement in their FP decisions. This could
indicate an explicit or implicit understanding of privacy pre­
ferences and norms around reproductive health within these
families and a prioritization of discussing their child’s survival
over concerns about infertility risk and FP (Tennyson &
Griffiths, 2019). These parents have also stated that they
would be equally happy with adopted or biological grandchil­
dren (Nahata et al., 2019). However, these boundaries, and the
preferred manner in which parent and family involvement
should be communicated, are not always explicitly discussed,
nor are there realizations among participants and family mem­
bers that they should be (Iannarino, 2018a). Several partici­
pants mentioned that they were not aware that they needed to
think about FP, either separately or with their partner, before
the start of treatment. Normative rhetorical theory (Goldsmith,
2019) can be an effective framework for researchers to describe
how and why YA patients and their partners prefer their
parents and family members to negotiate boundaries and
approach FP decision conversations together (or not).
Practical implications
The DECIDE framework can be used as a translational tool to
assist YA patients and, if appropriate, their romantic partners
and parents, in better coordinating one another’s FP decisionmaking preferences. By exploring the DECIDE framework,
YA patients and their partners and parents could be better
able to make sense of their relational experiences with cancer
(i.e., their fluid and overlapping social networks) and find
helpful language to negotiate their privacy and decisionmaking boundaries with each other and their extended family
10
N. T. IANNARINO AND A. L. PALMER-WACKERLY
members by coming to a shared understanding of why indi­
viduals prefer more autonomy or involvement in FP decisionmaking. Likewise, with our expanded delineations of the
closed-, filtered-, and open-collaborative styles, couples can
better negotiate as a unit (if and when they prefer to) about
what these decisions mean for the couple’s future identities
and relationship, before broaching with parents or family
members about how involved the couple wants other suppor­
ters to be. As such, using the expanded DECIDE framework
with YA patients and their loved ones during initial treatment
decision-making appointments could help reduce stress and
uncertainty related to negotiating decision-making involve­
ment (Krieger, 2014).
While HCPs were not the focus of our study, our findings
also have implications for clinical interactions where patients,
partners, and families might be involved. Because our data
illustrate that YAs have different preferences for which family
members, if any, to involve in FP decisions, more clinical
standardization around how HCPs should talk about FP with
YAs is needed. HCPs could initiate this conversation with YA
patients and ask them who they would like to invite to be
involved in FP decisions. HCPs should also remain aware
that while FP is often considered part of the patient’s overall
clinical treatment, YAs might view it as a separate discussion
topic. Perhaps because reproductive and sexual health are
generally viewed as private between a couple (Bute, 2009),
some YA couples in the current study wished HCPs would
have limited FP discussions to the couple. HCPs who included
parents in FP discussions without the couple’s consent violated
YAs’ expectations for privacy, which resulted in the couple
experiencing discomfort (Steuber & Solomon, 2011). Thus,
HCPs can provide person-centered cancer care to YA patients
by helping them clarify their preferences for the decisionmaking roles and responsibilities their loved ones could poten­
tially play (Dean & Street, 2014).
Limitations
Future research should continue building on this preliminary
study by working with larger, more diverse samples of YAs and
intended supporters to confirm and broaden our findings.
While the use of dyadic interviewing in the current study
provided a new perspective on decision-making in the YA
psychosocial oncofertility context, recruiting YA survivors
and partners who were still in committed relationships at the
time of interview could have caused us to overrepresent colla­
borative, and underrepresent isolated, decision-making styles
in our sample. Thus, future DECIDE research should build on
our findings by sampling YA patients, current partners, expartners, parents, siblings, other family members, and friends
for individual interviews to gain insight into their conversa­
tions regarding YA patients’ FP decisions.
Additionally, due to the homogenous nature of our sample,
our findings do not provide additional insight into FP deci­
sion-making for YAs of diverse ethnicities, races, gender orien­
tations, or sexual orientations who likely face even greater
barriers to FP (Loren et al., 2013). Capturing more diversity
in future samples can provide researchers with a better under­
standing of how YAs communicate differently about FP based
on their membership in different speech communities and the
perspectives their larger support networks hold on family
building. While financial considerations can also play a large
role in FP decision-making for YA patients (Loren et al., 2013),
FP cost was not a salient factor for YAs and their families in the
current study. Thus, future research should also work to recruit
YA participants who represent a wider range of socioeconomic
statuses and insurance coverage options.
Finally, we focused on how YA cancer patients and their
romantic partners communicate with one another, their par­
ents, and other family members during FP decisions because of
the paucity of research in this area. However, we recognize that
cancer treatment decisions, including FP decisions, are also
shared with clinicians. Thus, future research should also inves­
tigate how and why HCPs can influence FP decision-making
communication both on their own and alongside messages
from YA patients and partners, parents, and wider social net­
works. The TRIO framework (Laidsaar-Powell et al., 2017) was
developed to examine triadic interactions in oncology deci­
sion-making to characterize the involvement of lay caregivers
in conversations between adult cancer patients and key oncol­
ogy HCPs. This framework can be an additional entry point for
future researchers to examine how HCPs communicate YA
patients’ infertility risk and FP concerns within the broader
constellation of the YA’s support network.
Conclusion
The goal of the current study was to examine how YA cancer
patients and their romantic partners negotiate FP decisionmaking styles with each other, their parents, and other family
members. This study furthers our knowledge of the different
ways YA patients and their partners do (not) perceive FP
decision-making to be shared with others. By educating
patients and partners (as well as HCPs) on the importance of
explicitly discussing their preferences for shared FP decisionmaking with each other and with their extended family mem­
bers, the overall well-being of YA patients and partners might
be increased by giving them some biographical control during
a highly stressful, uncertain, and disruptive time.
Acknowledgments
The authors would like to thank Nina Jackson Levin, Carter Bracht,
Lauren Mott, Robert Hall, and this study’s participants for their contribu­
tions to this research.
ORCID
Nicholas T. Iannarino
http://orcid.org/0000-0002-1069-2173
http://orcid.org/0000-0001-8384-5225
Angela L. Palmer-Wackerly
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