The Decision‐Making Process of Young Adult Women with Cancer Who Considered Fertility Cryopreservation

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The Decision-Making Process of Young Adult Women with Cancer Who Considered Fertility Cryopreservation Patricia E. Hershberger, Lorna Finnegan, Penny F. Pierce, and Bert Scoccia

Correspondence Patricia E. Hershberger, PhD, MSN, RN, FNP-BC, University of Illinois at Chicago (MC 802), 845 S. Damen Avenue, Chicago, IL. [email protected]

ABSTRACT

Keywords decision research family planning fertility preservation oncofertility qualitative research survivorship theory development

Methods: Each woman participated in a semistructured interview by phone (n = 21) or e-mail (n = 6). Data were analyzed using the constant-comparative method to inductively ascertain the women’s decision-making process. NVivo 8 software was used to assist with data retrieval and analysis.

Objective: To provide an in-depth description of the decision-making process that women who are diagnosed with cancer undergo as they decide whether to accept or decline fertility cryopreservation. Design: A qualitative, grounded theory approach. Setting and Participants: Twenty-seven women (mean age = 29 years) who were diagnosed with cancer and were eligible for egg, embryo, or ovarian tissue cryopreservation were recruited from the Internet and two university centers.

Results: The decision-making process consists of four major phases that women experience to actively formulate a decision: identify, contemplate, resolve, and engage. In the identify phase, women acquire knowledge and experience a “double hit” scenario that is often devastating. Within the contemplate phase, five interrelated dimensions emerged including constructing and/or endorsing preferences and values and undergoing decisional debriefing sessions. A decision is reached in the resolve phase and carried out in the engage phase. Among the participants, 14 declined fertility cryopreservation and 13 accepted egg and/or embryo cryopreservation. Conclusion: The descriptive theoretical framework clarifies the underlying processes that women with cancer undergo to decide about fertility cryopreservation. Quality of care for women with cancer can be improved by implementing appropriately timed information and tailored developmental and contextual counseling to support decision making.

JOGNN, 42, 59-69; 2013. DOI: 10.1111/j.1552-6909.2012.01426.x Accepted August 2012

Patricia E. Hershberger, PhD, MSN, RN, FNP-BC, is an assistant professor in the College of Nursing, and an affiliate assistant professor in the College of Medicine, University of Illinois at Chicago, Chicago, IL.

(Continued)

Dr. Scoccia reports the following conflicts: consultant for Ferring Pharmaceuticals and speaker for Abbott Laboratories. All other authors report no conflict of interest or relevant financial relationships.

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ach year, about 70,000 individuals age 15 to 39 are diagnosed with cancer in the United States (National Cancer Institute at the National Institutes of Health, 2012), and females in particular are at greater risk of developing cancer from birth to age 39 than males (Siegel, Ward, Brawley, & Jemal, 2011). Fortunately, advances in cancer diagnostics and treatments have redefined the focus of cancer from a treatment-based approach to a broader perspective encompassing survivorship and quality-of-life concerns. Advances taking place in reproductive sciences have provided novel opportunities to preserve fertility, especially for women (AbdelHafez, Desai, Abou-Setta, Falcone, & Goldfarb, 2010; Cobo & Diaz, 2011; Lamar & DeCherney, 2009). The merging of these distinct scientific fields, cancer and reproduction, has resulted in fertility preservation options for women with cancer, including egg, embryo, and uterine

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tissue cryopreservation that were unprecedented in prior generations (Jeruss & Woodruff, 2009; Kolp & Hubayter, 2011; Kong, Skory, & Woodruff, 2011). Indeed, the American Society of Clinical Oncology (Lee et al., 2006) and the Ethics Committee of the American Society for Reproductive Medicine (2005) have issued statements supporting clinician discussion of fertility preservation among individuals diagnosed with cancer. The science surrounding clinician–patient education, communication, and decision support regarding fertility preservation options is evolving, and critical gaps remain (Duffy & Allen, 2009; Lamar & DeCherney, 2009; Schover, 2009). What is known is that a large majority, about 75%, of young adult cancer survivors who have not had children express a desire for future offspring (Schover, Brey, Lichtin, Lipshultz, & Jeha, 2002;

 C 2012 AWHONN, the Association of Women’s Health, Obstetric and Neonatal Nurses

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Clinician–patient education, communication, and decision support regarding fertility preservation options are evolving, and critical gaps remain.

Schover, Rybicki, Martin, & Bringelsen, 1999; Zebrack, Casillas, Nohr, Adams, & Zeltzer, 2004). The potential threat to fertility may be especially traumatic for women with cancer as previous research has shown that women experience more infertility-related psychological distress (e.g., depression and anxiety) than men (Greil, Shreffler, Schmidt, & McQuillan, 2011; Wischmann, Stammer, Scherg, Gerhard, & Verres, 2001; Wright et al., 1991). Clinicians and researchers have begun to recognize the unique needs of young adult women with cancer. Although research in this area has primarily focused on women with breast cancer, there is increasing evidence that younger women with cancer experience greater distress and less emotional well-being than their older women counterparts (Avis, Crawford, & Manuel, 2005; Ganz, Greendale, Petersen, Kahn, & Bower, 2003; Kroenke et al., 2004; Wenzel et al., 1999). This may be directly related to fertility as Partridge and colleagues (2004) found that 73% of women with breast cancer indicated that fertility was a concern; in a qualitative study, some breast cancer survivors expressed tremendous regret over not undergoing oocyte cryopreservation (Connell, Patterson, & Newman, 2006). Young women have also reported that the possibility of having children after cancer can serve as a powerful stimulus to recover (Dow, 1994).

article was to describe the decision-making process of young adult women who were diagnosed with cancer and had recently made a decision regarding whether to accept or decline fertility cryopreservation.

Methods In this qualitative study, a grounded theory approach was used (Charmaz, 2006; Glaser & Strauss, 1967). Institutional Review Board (IRB) members at the University of Illinois at Chicago and the University of Michigan reviewed and approved study procedures for adequate protection of human subjects prior to participant recruitment.

Recruitment To obtain the sample of 27 women, a multifaceted recruitment plan used successfully in related research was implemented (Hershberger et al., 2011). As part of the recruitment plan, an informational study website was developed that served as an Internet platform where potential participants could find information about the study. The website also served as a platform from which webbased announcements could be linked to other websites that served the target population. Likewise, brochures that contained information about the study were displayed in patient waiting areas at two large research university centers and clinicians (e.g., nurses, nurse practitioners, physicians) also provided information about the study to eligible participants. Women who contacted the principal investigator (PI) and met the following eligibility criteria were invited to participate in the study: (a) were diagnosed with cancer; (b) were eligible for fertility cryopreservation; (c) had recently decided whether to cryopreserve eggs, embryos, or ovarian tissue; and (d) added to the developing theoretical conceptualization (i.e., theoretical sampling), a primary tenet of grounded theory (Charmaz, 2006; Glaser, 1978; Morse, 2010). For the purpose of the study, fertility cryopreservation was defined as egg, embryo, or ovarian tissue cryopreservation because these three options represented current innovative approaches to fertility preservation for women with cancer where medical intervention (e.g., hormonal stimulation, surgery) is required for cryopreservation (Jeruss & Woodruff, 2009; Shear, 2010).

Bert Scoccia, MD, is a professor and Director of the Division of Reproductive Endocrinology and Infertility, University of Illinois at Chicago, Chicago, IL.

Despite these insights into fertility concerns among young adult women with cancer and the call for fertility counseling by professional groups, little is known about how young adult women with cancer reach a decision regarding fertility preservation. In particular, there is a paucity of research examining women’s decisions surrounding cryopreservation of eggs, embryos, or ovarian tissue, which require medical intervention such as hormonal stimulation (egg and embryo cryopreservation) or surgery (ovarian tissue cryopreservation), prior to cancer therapy. This leaves nurses, physicians, and other clinicians with little evidence from which to guide clinical practice to support women in their decision-making process about fertility preservation. A first step toward assisting women is understanding their decisionmaking processes. Therefore, the purpose of this

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Lorna Finnegan, PhD, APN, CPN, is an associate professor in the College of Nursing, University of Illinois at Chicago, Chicago, IL. Penny F. Pierce, PhD, RN, FAAN, is an associate professor in the School of Nursing, University of Michigan, Ann Arbor, MI.

Data Collection and Interview Procedures Semistructured interviews were conducted with the eligible participants. In keeping with the

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Hershberger, P. E., Finnegan, L., Pierce, P. F., and Scoccia, B.

IRB-approved protocol, each participant read, signed, and returned a written informed consent to the PI prior to participating in the interview. Each interview began with this broad, primary research question: “Please think out loud about your decision-making experience surrounding fertility preservation. Be as detailed or take as much time as you need to verbally express or write about your experience at this time.” Follow-up questions and probes such as “What was the most difficult part of making this decision?” and “Is there any part of your decision experience about whether to freeze eggs and embryos that was not discussed that you feel is important?” were used to clarify or obtain more breadth and depth about the woman’s decision-making process. Participants selected either a phone or e-mail interview format. Twenty-one (∼78%) participants opted for a digitally recorded phone interview, and six participants opted for an e-mail interview. Phone interviews averaged 58.86 minutes in length (range 34–114 minutes) and were limited to 120 minutes to minimize stress or discomfort during the sensitive interview (Cowles, 1988; Kavanaugh & Ayres, 1998). The phone interviews were transcribed verbatim and checked for accuracy. The e-mail interviews consisted of serial, asynchronous electronic message exchanges where the PI e-mailed the primary research question to the participant. Following the participant’s response, a series of investigator probe–participant response cycles took place that averaged 3.83 cycles per participant (range 2–6 cycles). Details regarding the e-mail interviewing procedures and data quality comparisons between phone and e-mail interviews have been reported elsewhere (Hershberger & Kavanaugh, 2012). After completing the interview, each participant received a $25 gift card to a national department or online store.

Data Management and Analysis The interviews, which garnered a wealth of rich, descriptive data, were deidentified and entered into NVivo 8 software (QSR International, Pty Ltd, Doncaster, Victoria, Australia). The software assisted with data retrieval and analysis. The constant comparative method was used for analysis as the PI read and coded each interview as data accumulated (Charmaz, 2006; Glaser, 1978; Glaser & Strauss, 1967). As coding took place, concepts, subcategories, and categories emerged that reflected the meaning and processes within the data. Saturation of the categories ensued as the theoretical conceptualization

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Young adult women diagnosed with cancer transition through four phases of a complex and dynamic decision-making process to decide whether to cryopreserve eggs and/or embryos.

of the decision-making process became apparent. To enhance rigor, triangulation was performed by having the interdisciplinary coauthors contribute to the emerging analysis and developing theoretical framework and by incorporating member checking (Buchbinder, 2011; Mays & Pope, 2000; Patton, 2002). Three of the participants took part in member checking by reviewing the preliminary findings (i.e., the developing framework) and providing reaction and feedback. Analytic insight obtained from the participants, which was confirmatory, was incorporated into the analysis (Glaser & Strauss; Patton).

Results Participants The majority (74%) of the women was recruited from the Internet and the remaining women were recruited at two university centers. The women resided in 15 different states within the United States and one woman lived in the District of Columbia. The women were diagnosed with various cancer types, and four of the women indicated that they had received a relapse or second diagnosis of cancer. Table 1 profiles the sociodemographic characteristics of the sample. The interviews took place between one to 16 months (mean interval = 5 months) after the women received an initial or a relapse or second diagnosis of cancer.

Theoretical Framework for the Decision-Making Process The inductively derived decision-making process framework consists of four major phases: identify, contemplate, resolve, and engage (see Figure 1). Within these phases, women undergo a complex and dynamic process where they learn, react, acknowledge, deliberate, and eventually make and carry out a decision regarding whether to undergo fertility cryopreservation. Although the framework appears linear, the decision-making process is iterative in that women can move back and forth between the phases. To enhance understanding of the decision-making process, we have inserted illustrative quotes from the women participants that are coded using pseudonyms selected by the respective

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Table 1: Sociodemographic Characteristics of the Participants

Table 1: Continued Characteristic

Characteristic

Women (N = 27)

Household income (U.S. dollars)

Age Mean (SD)

28.7 (5.66)

Range

19–40

Marital status Married

12

Single

13

Living with partner

2

Race and ethnicity

Under $10,000

2

$20,000–$29,999

3

$30,000–$69,999

8

$70,000–$89,999

4

$90,000–$129,999

8

$130,000+

2

Note. a One participant reported full-time employment and student status. b One participant reported two cancer diagnoses.

Black or African American

2

Hispanic

3

Identify Phase

Mexican American

1

Women described the onset of the decisionmaking process by recounting multiple consultations with clinicians including nurses and physicians. During these consultations the women would acquire knowledge about their cancer diagnosis and the subsequent impact on their fertility as they took on the identity of a young adult woman with cancer. A predominant response in this phase was a sense of being overwhelmed. This affected decision making as they verbalized difficulty understanding information as stated by Andrea [A]:

White

21

Education High school graduate

1

Some college

8

College graduate

5

Graduate or professional degree Not reported

12 1

Children Yes

3

No

23

Pregnant

I was talking to doctors and they were using a lot of jargon, and I was like, “I don’t even know what that means!” Like, you’re, “I don’t know what that is!” And I have lots of like, questions of how, what it means – like the nurses are probably like, “Don’t you know what that means?” [pauses] And I don’t.

1 a

Employment Full-time

16

Part-time

2

Student

9

Unemployed

1

Diagnosisb Breast cancer

14

Hodgkin’s lymphoma

5

Ovarian cancer

4

Leukemia

3

Non-Hodgkin’s lymphoma

1

Renal cancer

1

participant. Further context and insight is provided by indicating quotes from women who accepted fertility cryopreservation with an “A” code and quotes from women who declined fertility cryopreservation by a “D” code.

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Women (N = 27)

As the women began to process the information provided by their clinicians, they acknowledged their cancer diagnoses and the subsequent impact on fertility. The women often described this as a “double hit” scenario where the loss of fertility made the cancer diagnosis real. Michelle [A] wrote: One of the things that startled me the most when I was diagnosed was how it might affect my fertility. Not because I may never be able to bear a child, which I want to do, but because it made me realize how this diagnosis was going to be truly life changing and could affect me the rest of my life. The women envisioned overcoming cancer but the loss of fertility posed more uncertainty and often

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Figure 1. Theoretical framework of the decision-making process of young adult women with cancer.

tremendous heartache and grief. Kayla [D] explained: Then comes cancer. Alright, you know what, we can handle this. We’re educated enough, that, you know what, this is not all dead set. This is a bump in the road and we will face it head on and we’ll fight, and years from now we’ll look back and it’ll be a memory. And that’s okay. But then you tell us on top of it, that we can’t have children. We can’t have a family . . . you know, as tears rolled down my cheeks–which was not me what-so-ever–I can deal with the cancer, but throw this [loss of fertility] on top of it and it was devastating, absolutely devastating.

Contemplate Phase In the contemplate phase, the women actively engage in the process of formulating a decision about fertility cryopreservation. Within this phase, five salient and interconnected dimensions emerged. Acquire and Integrate Information. Although women learned about their cancer and the effects that cancer therapy would have on their fertility in the identify phase, a hallmark of the contemplate phase was the active engagement in acquiring and integrating information. For example, women described multiple attempts to obtain additional information including, “calling one doctor then calling another” (Kayla [D]) and actively seeking information on the Internet. Rachel [A] advised other women who are diagnosed with cancer and

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facing fertility loss to “Do your own research so you can understand and have meaningful conversations with your care team.” Although all of the women underwent a process of acquiring and integrating information, they expressed varying preferences regarding how much additional information was personally relevant. Incorporate Prior Experiences. Women often drew upon prior life experiences to make their decisions. Alice [D] stated that before her cancer diagnosis she had undergone infertility treatment using intrauterine insemination without success. Now remarried and diagnosed with breast cancer, she opted not to undergo embryo cryopreservation. Another participant, Elizabeth [D], stated that a close friend experienced a spontaneous pregnancy after undergoing similar cancer treatment to her own. She explained, So that was a big, a pretty big factor in my decision, that since she [her friend] was okay having children – I kind of took that as a really good sign [that spontaneous ovulation and pregnancy was possible without cryopreservation]. Construct and Determine Preferences and Values. Faced with the option of undergoing fertility cryopreservation, women described how they constructed and determined their preferences and values surrounding treatment. For example, a salient value was determining the importance of initial, or if they were considering adding to their existing family, additional motherhood. This

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value was reported by all of the women although their personal preference for motherhood differed. Rachel [A] wrote: I was only twenty-three years old and never thought I would have to make decisions about whether or not to have children at this point in my life. I wasn’t even sure I wanted kids – I had always told my husband I wanted to adopt, yet the possibility that I would one day be unable to conceive changed things. I think the possibility of my fertility being taken away from me made me realize that I might someday want to have kids – at the very least, I wanted to have the option. Conversely, Gwen [D] stated: “My husband and I already had the kid talk [prior to her cancer diagnosis] and knew that we did not necessarily want children.” Other preferences and values underlying the decision-making process included financial cost and survival. Alex [D] said in response to the primary interview question, “I guess the biggest reason why I didn’t do it [cryopreservation] is, obviously, well, my insurance didn’t cover it, and it’s expensive.” Other women voiced a strong preference for surviving cancer in and of itself. Amy [D] said, Honestly, you look at it [cryopreservation] like, well . . . you kind of have to focus on living and treating your disease because if you’re not gonna be here in five years to take care of your child – what’s the point of trying to have one?

Consider Contextual Components. Contextual components also shaped the women’s decisions. In particular, women described the challenge of making a decision under an extremely short time frame that was often compounded by physical and emotional strain. Texas [D] wrote, “It’s tough to make this decision under the gun . . . feeling like you don’t have enough time to think about it.” Kayla [D] said, “I was just exhausted; I was physically beyond exhausted . . . I can’t do it [fertility cryopreservation]. I am just too tired.”

age range, having a baby is like – it is almost the same level for most women is as getting married.” Regarding relationships, single women often expressed the additional burden associated with embryo cryopreservation of considering whether to use a sperm donor or how to approach partners who they were unsure about long-term relationship commitments. Nickki [D] said poignantly, I’ve only dated my boyfriend for about a year, year and a half. And we’re still getting to know each other. We were fighting a lot, and he really didn’t seem too eager to give me his sperm to make embryos. Married women or those in committed relationships expressed the burden of finding agreement between both partners regarding cryopreservation. For example, Joey [A] stated that she and her husband initially disagreed about whether to undergo fertility preservation but went on to explain, I felt like we came together and kind of, you know, two different sides, two different emotions, kind of decided, okay, this is what we’re going to do. So it was definitely a decision we made together.

Undergo Decisional Debriefing. All of the women engaged in one or more decisional debriefing sessions where the woman discussed, qualified, and reacted to and incorporated information, prior experiences, preferences and values, and contextual components about fertility cryopreservation with one or more trusted individuals. Important components of the debriefing session were deliberation, trustworthiness, and a dialogue free from judgment and bias that allowed an open exchange of thoughts and emotions. During these debriefing sessions, the women would formulate and/or endorse their decision intent about fertility cryopreservation. Women carried out the debriefing sessions with trusted clinicians, parents, partners, or even newly formed friends from the Internet. For example, Elizabeth [D] reported lengthy discussions with her parents. She stated,

The context of women’s developmental stages and relationships were other salient components. Morgan [D] said, “I think that people need to recognize that when you are dealing with women in my

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My mom and I are really close so I always kind of look to her for what her advice would be. She was the one – her and my dad – were the ones who helped me make a lot of the big decisions.

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Jennifer [A] stated that she talked at length with other young women “on the boards” (i.e., Internet site discussion forums devoted to young adult women with cancer) who assisted her in reaching a decision. To illustrate the importance of the debriefing session within a nonjudgmental and open exchange process, Alex [D] stated that in retrospect she would have preferred that her mother not be present when fertility cryopreservation was discussed with her clinicians as she might have decided differently. In her words: So I think like one thing I was kind of thinking of that I thought would have helped, is if, you know, that maybe the doctors would have talked to me about it [fertility cryopreservation] at a time when I was by myself. You know, because, if it had been, my oncologist and just me, maybe I would have talked to her [oncologist] about it a little bit more and I think maybe [I would have] felt a little bit more comfortable expressing my feelings.

Resolve Phase In the resolve phase, women were able to decide whether to undergo fertility cryopreservation. Although the time frame for this phase was brief, it indicated another step in the process where the decision about whether to undergo fertility cryopreservation became clear, but action to carry out the decision had not yet occurred. For example, Joey [A] said, That’s when I made my decision because I spoke with the nurse and she explained everything to me [about cryopreservation], you know, that “there’s no guarantee that, you know, you won’t be able to have children, but there is a chance that you may not, so you know, we just want to cover everything.”

Engage Phase In the engage phase, women had reached a firm decision about whether to undergo fertility cryopreservation, which resulted in taking appropriate actions or behaviors to carry out the decision. In the sample, 14 women decided to decline egg or embryo cryopreservation. Of the remaining 13 women, six decided to cryopreserve eggs, six decided to cryopreserve embryos, and one decided to cryopreserve eggs and embryos. None of the women opted for ovarian tissue cryopreservation.

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The women’s accounts underscore a difficult and often heart-wrenching process regardless of whether they accepted or declined fertility cryopreservation.

The 14 women who declined cryopreservation conveyed to clinicians that they were not interested in undergoing fertility cryopreservation or that it was not important to preserve eggs or embryos for future use. However, the majority of the women who declined fertility cryopreservation remained open to other options for motherhood. Kayla [D] said, “[We] made the decision that, you know, once my health is back on track, that God willing, we’ll be able to adopt.” Women that accepted fertility cryopreservation reported implementing their decision by scheduling procedures, appointments, or ordering medications. The women also reflected on the overall decisionmaking process. The majority of the women described a difficult and tumultuous process to formulate a decision as articulated by Ann [D] who said, “Looking back across my life in the last 30 years, I definitely think it was the hardest decision I have ever made.” One woman (Crystal [A]) stated, “It tortured me to make a decision.” However, not all women expressed difficulty in deciding whether to undergo fertility cryopreservation.

Discussion The framework represents a foundational description of the decision-making process that young adult women undergo to decide whether to cryopreserve eggs or embryos following a diagnosis of cancer. Nurses, advanced practice nurses, and other clinicians can use this framework to improve education, enhance consultation, and optimize decision support. For example, during the identify phase, receiving information and education from clinicians was essential; however, women often felt overwhelmed and had difficulty attending to and processing information. It was not until women moved into the contemplate phase where they were able to actively integrate information as they evaluated the importance of motherhood. When counseling women, consideration of these findings could provide guidance for timing the amount of information and education exchanged between clinicians and women during these early phases. As women move forward in the process and express their decision intent in the resolve phase, clinicians can help women transition into the engage phase by communicating

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appropriate actions to take and by assisting women with actions and behaviors that would carry out the woman’s decision (e.g., scheduling or cancelling clinic appointments with a fertility center or adoption agency). Another important finding within the contemplate phase is the emergence of the five dimensions including the contextual components. The subtle contextual differences expressed by the women surrounding their developmental stages and relationships may be used to tailor decision support. For example, single women expressed difficulty navigating the decision process because in addition to deciding whether to cryopreserve eggs, they had the added burden of deciding whether and if so, how to obtain sperm donors or approach partners for embryo cryopreservation. Klock and colleagues (Klock, Zhang, & Kazer, 2010) identified similar findings and tailored counseling of single partnered women about the possibility of inseminating only one half of their eggs with their partner’s sperm and referred the women for immediate legal counseling. In our study, married women expressed challenges of reaching consensus with their partners about cryopreservation, and women in the early stages of marriage reported difficulty discussing fertility preservation options openly and effectively with their spouses. Avis and colleagues (2005) identified relationships as a salient concern of younger women with breast cancer, and our findings add insight into the particular relationship challenges for young adult women with cancer. The findings described here also relate to a broader concern that resonated in the women’s stories: the unique challenges because of agerelated developmental stages compared to the majority of women with cancer in the United States. Nurses can play an important role in advocating and encouraging age-appropriate care for these women. Likewise, support for the National Cancer Institute and the LIVESTRONGTM Young Adult Alliance (2006) would be beneficial as these organizations promote awareness, programs, and initiatives to improve outcomes and quality of care and quality of life that are specific to young adults and adolescents (i.e., individuals at age 15–39) with cancer as all but one of our participants fell within this age range. A key finding was identifying the decisional debriefing sessions that women use to formulate or endorse their decision. The debriefing session represents an important step in the process that

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can occur between clinicians and young adult women. Other investigators have described debriefing sessions, yet these are often performed to alleviate stress from traumatic experiences (Dyregrov, 1997; Gamble, Creedy, Webster, & Moyle, 2002; Kaplan, Iancu, & Bodner, 2001). Investigators in decision science have recognized the importance of deliberation in establishing a meaningful decision (Charles, Gafni, & Whelan, 1999; Elwyn, Frosch, Volandes, Edwards, & Montori, 2010). There is also emergent work that has described the importance of “decision coaching” where nurses and other “neutral” clinicians (e.g., social workers, psychologists) provide support to aid patients in managing decisional needs and conflict to facilitate decision making (Stacey et al., 2008, p. 28). Our findings provide support for decisional coaching sessions where women could participate in an open and honest deliberation process where information is provided and clarified, values are constructed and/or confirmed, and thoughts and emotions are considered related to fertility cryopreservation. Further exploration of these key elements and other underlying processes within the decisional debriefing sessions reported here and emergent decisional coaching techniques including how these sessions can be efficiently and effectively implemented by nurses and other health professionals in clinical settings would be an important area for future research. The women’s accounts underscore a difficult and often heart-wrenching process regardless of whether the woman accepted or declined fertility cryopreservation. However, it should be noted that not all of the women described hardship as they navigated the process and formulated a decision. Thus, a critical challenge for the future is to aid clinicians in the identification of women who would benefit from decision support to enable women to make informed and personally relevant decisions that alleviate stress, future regret, and enhance coping. The theoretical framework presented here adds to the science of descriptive decision theory that explicates how individuals make difficult and complex choices in the real world (Bekker, 2009; Siminoff & Step, 2005). The framework also supports our related theoretical research among couples who are deciding whether to use preimplantation genetic diagnosis (Hershberger et al., 2012), however, there are noted differences. Foremost, we have refined our conceptualization to align with Fawcett’s (2005) description of midrange nursing theories. Second, although this study provides

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support for the major phases of the decisionmaking process identified in the preimplantation genetic diagnosis study, it also extends knowledge of key underlying processes—especially those within the contemplate phase—and provides additional context for understanding. Yet remaining questions abound surrounding the decision-making process and include the following: “How can nurses best assist women with education and information processing in the identify phase? What interventions might nurses implement to reduce stress and enhance decision support in each of the four major phases? What information do women with cancer acquire about fertility cryopreservation outside the clinical setting and how does that information enhance or impede decision making? What is the process by which women construct preferences and values? What similarities and differences are there in the preferences and values of women who accept versus those who decline cryopreservation?” Future research that focuses on these questions would be beneficial as well as research that incorporates women’s long-term satisfaction and regret regarding their decisions. Other areas for future research primed by our findings include comparing and contrasting nuances of the decision experience among emergent subcategories of women including single versus married women and those with varying reproductive histories and cancer diagnoses (e.g., breast, ovarian, leukemia).

Conclusion We examined the decision-making process of young adult women with cancer surrounding fertility cryopreservation in detail. Through increased awareness and understanding of the process, nurses and other clinicians can begin to appropriately time and tailor education, counseling, and decision support to improve the quality of care. Advocacy and support for implementing care that is developmentally appropriate for young adult women is also needed. As we move forward, it is crucial for nurse clinicians and researchers to continue to work together toward understanding and improving the decision-making process surrounding fertility cryopreservation to benefit all young adult women with cancer.

Acknowledgment Funded by the National Institutes of Health, National Institute of Child Health and Human Development and the Office of Research on Women’s Health (Grant #K12 HD055892) and by the University of Michigan Office of the Vice President for Research.

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