Dyadic experience of uncertainty among couples following a gynecological cancer diagnosis

Abstract

Uncertainty is common and distressing for both patients and partners, yet research has largely focused on patients’ perspectives, with limited attention to couples facing gynecological cancer. This study aimed to characterize uncertainty experience among couples undergoing gynecological cancers using a focused qualitative descriptive design. Twelve interviews were conducted with four couples, including dyadic and individual sessions. Interviews were recorded, de-identified, transcribed, verified, and double-coded. Han’s Taxonomy of Uncertainty guided analysis and interpretation. Participants described sources and issues of uncertainty such as recurrence risk, unclear treatment options, and future planning. Three themes were identified: the nuanced experience of shared and individual uncertainty, navigating the spectrum of uncertainty, and implications of uncertainty on family and work life. Findings highlight the wide range of the dyadic nature of uncertainty among couples face gynecological cancer. Resources and support are needed to address uncertainty in both patients and partners to reduce distress and promote adjustment.

Keywords

uncertainty gynecology cancer partners couple content analysis

Introduction

Gynecological cancer occurs in approximately 1 in 20 individuals assigned female at birth in the United States (American Cancer Society, n.d.). It is also the fifth leading cause of cancer death among individuals assigned female in the United States (Miller et al., 2016). A diagnosis of gynecological cancer profoundly alters one’s life trajectory. Patients undergo a sequence of active treatments such as surgery, chemotherapy, radiation therapy, and maintenance therapy during periods of remission. Feelings of uncertainty stemming from both the cancer diagnosis and its treatment are often present throughout the treatment process (de Rooij et al., 2018; Lockwood-Rayermann, 2006). A partner is defined as an individual in a romantic relationship who cohabitates with a patient, both of whom are affected by uncertainty which can mutually influence one another (Zhang et al., 2022). In the nursing discipline, Mishel’s uncertainty in illness theory has informed significant progress made in uncertainty research (Mishel, 1981). According to Mishel’s theory, uncertainty is defined as being unable to assign meaning due to complexity, ambiguity, and lack of information (Mishel, 1981). This theory emphasizes scientific uncertainty, and highlights how a lack of information regarding how to approach personal issues and the healthcare system contributes to uncertainty. Building off Mishel’s work, Han’s taxonomy of uncertainty comprehensively describes uncertainty within the healthcare field (Han et al., 2011). Uncertainty is broadly defined by Han as an individual’s perception of not knowing, or perceiving that the knowledge is ambiguous, complex and/or difficult to make predictions (Han et al., 2011).

Most of the recovery phase from surgery or chemotherapy happens within a patient’s home. Consequently, partners assume an amplified role in undertaking familial duties and responsibilities, typically assuming the mantle of primary caregiver for the patient. Due to the interdependence between patients and partners coping with cancer experiences (Song et al., 2011), the experiences of uncertainty by both patients and their partners can mutually influence each other. Partners who frequently accompany patients to clinic and treatment visits are exposed to a wide array of complex information from healthcare professionals. This exposure can result in varying perspectives on cancer prognosis and concerns related to treatment decision-making. Consequently, the interaction between patient and partner may positively or negatively influence patient’s perceptions of uncertainty.

Unmanaged uncertainty has a detrimental effect on both patients and their partner’s quality of life. Uncertainty has been shown to be a significant source of distress, which adversely influences coping, psychological adjustment, and quality of life in patients with gynecological cancer (McCorkle et al., 2003; Mishel et al., 1984; Mishel and Sorenson, 1991; Roland et al., 2013; Schulman-Green et al., 2008). Investigators have demonstrated that partners report slightly higher uncertainty and receive less support than patients with cancer (Senatore, 2013). Partners with unrelieved uncertainty report decreased dyadic coping, altered family functioning, role changes, family communication issues, and decreased quality of life (Northouse et al., 1998; Rolland, 2005; Senatore, 2013).

Theoretical framework

Han’s model described three dimension of uncertainty, including issues, sources, and locus of uncertainty (Han et al., 2011). For each of the specific issues of uncertainty—scientific, practical, and personal—the underlying cause may be any of the sources of uncertainty: probability, ambiguity, or complexity (Han et al., 2011). Any or all of these sources may engender uncertainty about not only diagnosis, prognosis, causal explanations, and treatment recommendations (scientific uncertainty), but also the expected quality of care and the procedures required to access care (practical uncertainty), as well as the effects of illness or treatment on one’s personal relationships and goals in life (personal uncertainty; Han et al., 2011). For example, a patient contemplating a hysterectomy for newly diagnosed ovarian cancer may experience uncertainty about numerous issues, such as the potential of cancer recurrence following surgery, the competence of their chosen surgeon and hospital, and the impact of surgical side effects on their marital relationship, sense of well-being, and achievement of life goals. In theory, probabilities exist for all of these outcomes, and as these probabilities are unknown—and thus ambiguous—in varying degrees, they are further compounded by varying degrees of complexity (Han et al., 2011).

Research has depicted patients’ experiences with uncertainty in various cancers, such as breast cancer and prostate cancer (Langmuir et al., 2023; Northouse et al., 1998; Song et al., 2011). However, existing research has tended to focus more on patients’ perspectives, with comparatively less attention to how both patients and their partners experience and manage uncertainty following a gynecological cancer diagnosis. To address these gaps, this study aimed to characterize experiences of uncertainty among patients with gynecological cancer and their partners.

Methods

Study design

We used an exploratory qualitative descriptive design informed by Han’s taxonomy of uncertainty (Hsieh and Shannon, 2005). We received IRB approval for this study. Data were collected from four patient-partner dyads. We conducted eight individual semi-structured interviews and four joint semi-structured interviews during 2021–2022, resulting in a total of 12 interviews.

Participants

Participants who met the following criteria were included: both the patient and the partner are 21 years of age or older; are able to read and write in English; self-identify as being in an intimate relationship with each other. The patients’ gynecological cancer diagnosis (including cervical, ovarian, uterine, vaginal, and vulvar cancer) also had to have been made within 3 months before study enrollment.

Procedures

Participants were recruited from the gynecological oncology clinic at a large university-affiliated cancer institute. The clinic staff shared a study flyer with potential subjects. The study coordinator met with interested patients and their partners and obtained consent. We first conducted joint (dyadic) interviews, followed approximately 2 weeks later by two individual interviews (one interview with each member of the couple) using a semi-structured interview guide to ask about couples’ experience of uncertainty related to cancer diagnosis and treatment, and their needs and preferences for managing uncertainty. A gap of 2 weeks between interviews was used to accommodate scheduling. Joint questions focused on shared experiences, communication dynamics, and how the couple navigates uncertainty together. Individual questions focused on personal feelings, coping strategies, and the individual’s perception of uncertainty that may not be disclosed in joint interview (interview guide in Supplemental Material 1). All the interviews were conducted by the study coordinator skilled in qualitative interviewing and occurred via HIPAA-compliant video conferencing. Reflexivity was considered through ongoing team discussions regarding potential researcher influence on data collection and interpretation. Each interview lasted 45–90 minutes and was audio-recorded, de-identified, transcribed verbatim, and verified.

Data analysis

Directed content analysis was guided by Han’s taxonomy of uncertainty. Data analysis followed three steps: (1) open coding to identify initial codes and create the codebook; (2) focused coding to categorize domains and types of uncertainty, needs and preferences for managing uncertainty, and residual codes for new information; and (3) within-dyad cross-comparison to identify common and divergent themes in patients and partners. Categories and subcategories were refined as new information emerged. Han’s framework was used to compare and contrast the codes, leading to the identification of categories or subcategories of uncertainty experiences (Bengtsson, 2016; Hsieh and Shannon, 2005). Data were analyzed by the PI and a trained team member using an interactive and team-based approach. Coding differences were discussed and resolved by consensus, with consultation from a third team member or group discussion when needed. An audit trail was maintained to document coding decisions and theme development. We used negative case analysis by analyzing data that did not fit patterns and refining themes accordingly. ATLAS.ti (version 8.0) software was used to manage data and facilitate data analysis.

Results

Participants’ characteristics

In summary, four couples took part in this study. Female patients’ ages ranged from mid-50s to mid-70s. Of the four patients, 3 were diagnosed with ovarian cancer, and one was diagnosed with cervical cancer. Two participants were diagnosed at an early stage, one had recurrent disease, and one was diagnosed at an advanced stage. All patients had surgery and were receiving chemotherapy. Partners were all males and their ages ranged from mid-50s to mid-70s. They all considered themselves to be primary caregivers for their partners. Note, data collection was conducted during the COVID-19 pandemic, which brought additional practical and psychosocial uncertainty for participants.

Overview

Participants described key sources and issues of uncertainty related to their new cancer diagnosis and treatment, including the risk of recurrence, unclear benefits of treatment, prognosis, future planning, and the complexity of treatment options and cancer progression. These uncertainties had a complex impact on both patients and their partners, often affecting them individually and together. As time passed, the sources of uncertainty shifted, influencing not just their personal lives, but also their relationships, family dynamics, and work life. The exemplar quotations for issues and sources of uncertainty are in the Table 1. The three main themes of our findings are described below.

Table 1.

Preliminary codes, definition, and examples of quotes.

Codes	Definition	Example quotes
Scientific-Diagnosis	Malignant vs benign, staging	It was a small tumor to start with, I believe, right? He was telling me what to do, and the oncologist said that’s fine. Now come up here and see this one just so you get a second opinion, she looked over everything. I had a biopsy done. It showed, you know, that it was in fact cancer. . .. . . I had the surgery, which it ended up to be major. She couldn’t just do it laparoscopic. They had to have somebody come in and clean the bowel.
Scientific-Prognosis	Concerns about future outcomes (e.g. life expectancy, cancer recurrence, metastasis, remission period)	Sometimes I’m not sure, like could I someday end up dying from my heart condition trying to keep the cancer away?
Scientific-Causal explanation	Cancer risk factors, carcinogenic events	I’m not—you know, the median age is like 67, and I’m, you know, 52, and I guess I’ve always felt like I’m a very youthful 52-year-old, and you know, one of the risks it said was being overweight, and I’m not overweight. If anything, I’m a little underweight. And, um, not exercising, and, you know, not having a healthy lifestyle can increase your risks, and I didn’t have any of those things. The only thing I did have is that I’d never had children, but that seemed like such a small thing. Um, so I just never thought I would have cancer.
Scientific-Treatment recommendation	Concerns about decision on prevention and treatment of the cancer, efficacy and safety of treatment (e.g. whether certain chemotherapy should be used, what are non-drug therapy, what intervention can be undertaken to slow down the progress)	I’m trying to make a decision about this oral medication, and there’s really no data. And, um, there’s some suppositions about why it might be helpful.
Practice-Structure of care	Identity and competence of health care provider, the quality of care one can expect to receive from a given clinician or institution	Yeah, I remember, the first time, we talked about, like, how tough it was to figure out what doctor to go to and who to see and how to decide and—I just felt like that was so hard and trying, and then you got people in—like, my son, he was like, “I think you should go to <Hospital> because they’re like the best.”
Practice-Process of care	Required action for accessing health care	I’m in a situation where I have to find a ride from somebody else or for somebody to pick me up.
Personal-Psychosocial	Effects of one’s illness or treatment on one’s psychological well-being, financial situation, personal relationship, goals or outlook on life, on one’s personal relationships, the welfare of loved ones	I think it really has, in a number of ways brought us together a lot now. . . .. . .. But, you know, I think I’m being made aware of that has been very helpful. And as she said, it’s been really, um—it’s great, we’re thinking about, things that we do together that we haven’t done a long, long time.
Personal-Existential	Effects of illness on sense of meaning in life	I am thinking about these existential questions, um, nobody asks you about those things, but they’re constantly present. You know, people ask me how I am and ask me about the treatments and why I, you know, chose to do what I chose to do, and, walk through all of that and, but the big, sort of existential questions about, you know, survival and planning for the future and sort of spiritual, um, questions and—not religious questions, but spiritual questions.
Probability	The likelihood of a future event, the indeterminacy of the phenomenon or future outcome	What she thinks the chances of my having another recurrence in, say, the next two to five years or so.
Complexity	A multiplicity of possible states for a single event; multiple facets of the diagnosis and treatment; multiple choice options	That was new knowledge to me, just like get—finding out like the—the heart situation and, you know, whether or not there was already something preexisting with my heart issue beforehand we don’t know because it wasn’t interfering with my life enough for me to have any knowledge of it. Um, but certainly, um, you can get something like heart failure from cancer and then it can be exacerbated even from certain types of chemotherapy—that’s been new knowledge to me.
Ambiguity	Conflicting opinion or evidence, lack of information, lack of reliability or adequacy of risk estimate	She said, ‘But you know <Name>, there’s never going to be data, like even if you wait 5 or 10 years because it’s such a rare tumor and enrolling people in studies about it, So it’s not even like if I—if I go on it and wait five years that there’s some study, there’s no good way to plan—there’s never been a particularly good way to plan the treatment.

The nuanced experience of shared and individual uncertainty

Patients and partners alike described their struggles with uncertainty across several domains. The most commonly reported issues of uncertainty were psychosocial uncertainty which related to the influence of cancer on people’s personal lives. The new gynecological cancer diagnosis brought up decision making challenges regarding cancer treatment and future planning, as well as existential crises. Participants often talked about the heightened emotions associated with recurrence rates and prognosis. The unknowns of what the future held for their family life was also hard for dyads to manage. Participants also talked about the complexity and ambiguity of the information they received and how it was hard for them to absorb it and make decisions regarding their treatment. These experiences reflect psychosocial uncertainty related to probabilistic outcomes, such as recurrence rate and prognosis, as well as scientific and practical uncertainty from ambiguity and complexity of treatment. For example, in a joint interview, one couple expressed uncertainty associated with the treatment plans for maintenance after a series of chemotherapy treatments, given the complexity of a specific gene mutation.

Partner: After these last two chemo treatments, I’m starting to wonder about what the next step will be. It’s on my mind, and hopefully, we’ll find out soon. But I’m not sure about that. Patient (receiving chemotherapy, ovarian cancer): After the last treatment, they’ll start the maintenance phase. I’ll likely be on medication for the rest of my life, I assume. I also need to see other doctors to make sure everything is covered—because with BRCA2, there’s the breasts, pancreas, bladder, melanoma—so I need to cover all my bases.

These responses illustrate divergent orientations to uncertainty: the partner focused on the unknown next steps, while the patient emphasized planning and ongoing management. In this way, partners fulfilled different roles in responding to psychosocial uncertainty within the couple.

On the other hand, the couples did not always experience the same issues of uncertainty, as their individual differences in family history, education, and background resulted in them often having unique perspectives. Patients were often concerned about ambiguity, while partners commonly focused on probabilities. One partner mentioned “there could be possible relapsing, this is something that’s a long term thing.” Even though participants were attentive to both present and future challenges, there were discrepancies between them. These findings demonstrate how members of the dyad may experience different sources of uncertainty, with patients more often describing ambiguity in medical information while partners tended to emphasize probabilistic uncertainty related to disease progression and relapse. For example, in one partners’ interview, focusing on the present was the main focus. When asked about uncertainty regarding prognosis, this partner (caregiver of a patient who has ovarian cancer and is receiving chemotherapy) said in an individual interview:

I guess I don’t look at it too closely. But I will admit that this does suggest maybe she won’t live as long as she thought she might originally, which does put it question how long we have together, possibly. I guess I don’t know the future, so I just only work with what I do know.

In addition, not all medical information was openly shared and discussed, contributing to diverse perspectives within couples. For example, during a joint interview, one patient shared that being restricted by the pandemic, her partner was not able to accompany her to her appointments. The partner expressed understanding why his wife did not relay all the information to him after each appointment, reflecting psychosocial and practical uncertainty driven by the complexity of pandemic influence and the ambiguity in communication.

Patient: so many things have been affected by the pandemic, I’ve gone to all of my appointments alone. . . . And so I relay the information to him. Partner: I guess I feel sure that you’re probably sparing me some of the fear and worry in your descriptions. There’s this whole idea that you’ve talked about that the way you’re seeing the rest of your life is, maybe, curtailed a little. Like, you’re not sure you’re gonna be around as long as you thought you would be.

Navigating the spectrum of uncertainty

Patients and their partners constantly adapt to uncertainty, especially regarding prognosis and treatment decisions. They grapple with the challenge of assimilating new information, reflecting scientific uncertainty driven by the ambiguity and complexity of limited available information to guide their decisions. The decision-making process evolves continuously along the spectrum of uncertainty. They live in a state of uncertainty and sometimes feel unable to move forward. For example, participants shared that when they were first told about the cancer diagnosis, it was frightening moment and they did not know what treatment would look like. However, as they became familiar with the pattern of chemotherapy treatment, their initial uncertainty decreased. But, as they moved closer to the maintenance phase, and began thinking about treatment options, new uncertainties resurfaced. Participants shared their need for greater reassurance from healthcare providers to move closer to certainty. Despite patients having positive responses to treatment, new challenges continued to emerge. One patient during the joint interview reported that:

I think if I needed resources and chose to, I could access them quite easily, but I think the issues of sexuality around some of the surgeries that are used to treat gynecological cancers and sort of, getting back to that after some time off following a surgery that may be something that may need to be asked about more, blatantly, you know, by oncologists, particularly around these types of cancer.

While challenging, moving along the spectrum of uncertainty also provides opportunities for growth and resilience. It teaches individuals to embrace ambiguity, builds a tolerance for uncertainty, and can enhance one’s ability to construct positive reframes and center one’s values. One patient described in a joint interview said:

I think we feel assured of some of the priorities that we chose previously in life are spending time with our kids and being outdoors and living somewhere where we can do those things. I think there’s certainty that those were right and continue to be right for us. I’m thinking a little bit about even enhancing some of my focus on some of those things. Like, when I go back to work, I’m negotiating a small cutback in my hours, and I feel like it continues to be important that I’m home as much as I can be as our kids finish high school and all of that.

Overall, this theme highlights how participants moved along the spectrum of uncertainty as familiarity with treatment routines increased, information became clearer, relational support within the dyad strengthened, and uncertainty was gradually reframed as part of everyday life.

Implication of uncertainty for family and work life

Gynecological cancers occur in women in various stages of their lives. Participants reported having significant challenges in maintaining a balance between their family and work commitments as they underwent cancer treatments. In addition, couples found themselves dealing with increased stress levels as they coped with the impact of both cancer and the pandemic. One couple reported their children had to choose home learning instead of going to school to avoid COVID exposure even though they would have preferred to be at school. This reflects psychosocial and practical uncertainty shaped by the complexity nature of multiple stressors, including the pandemic, a new cancer diagnosis, and probability of infection risk influencing decision-making. A patient mentioned in an individual interview:

They (two teenagers) are doing all remote learning from home to keep us a little bit safer during my chemotherapy. And they’ve been good sports about that, but it has been stressful for them. They would rather be at school.

On the other hand, although the cancer did affect patients and their partners in a more negative way than positive, couples reported feeling closer to each other and more emotionally attached. Within this shared experience, partners often assumed the caregiving role who provided instrumental and emotional support to the patients. Partners acknowledged their caregiving role and fulfilled their family responsibilities, but struggled balancing their own needs with the patient’s needs, especially when it came to their emotional needs. Partners also struggled with work life balance. One patient said in an individual interview that:

I just don’t have the energy to participate in things that we normally would do together with the kids. And so <partner’s name> doing them alone. Like, we make cider several times, normally, every fall. And < partner’s name> pretty much did that alone with the kids this year. But, he’s had to take more responsibility not just for the chores, but for some of the lighter aspects of life, too, like keeping things a little bit normal.

These experiences reflect psychosocial uncertainty stemming from the complexity of balancing family, work, and caregiving responsibilities aimed at cancer treatment and pandemic-related risks. It also suggests how patients and partners engage with uncertainty through unique roles and priorities.

Negative cases: Lack of presence of uncertainty

Despite diverse experiences of uncertainty among participants, one partner expressed in an individual interview little concern, stating, “I guess I don’t look at it too closely.” His perspective may related to his coping style, prior experiences, and supportive role. He explained, “I can only work with what I do know. I find it unproductive to get too worried with things beyond my control. I tend to deal with what is and what I know.” Focusing on “what our family might need or my wife’s needs” gave him “more of a sense of purpose, I felt like I was called to step up and be more helpful.” He also recalled witnessing a close friend’s recurrent cancer and passing in his youth. This case further suggests the nuanced experience of uncertainty, showing that while common, it is not universal.

Discussion

This study described the uncertainty experience in patients with gynecological cancer and their partners in the midst of receiving a new cancer diagnosis and treatment during the COVID-19 pandemic through the lens of Han’s taxonomy of uncertainty (Han et al., 2011). Three themes are thoroughly described: the nuanced experience of shared and individual uncertainty in this illness context, navigating the spectrum of uncertainty, and the implications of uncertainty on family and work life.

The issues of uncertainty, including scientific, practical and psychosocial uncertainty were represented in the data. The most commonly reported issue of uncertainty was psychosocial uncertainty which related to the influence of cancer on people’s personal lives. Compared to Chen et al. (2022), who reported that practical and scientific uncertainty, were most commonly discussed during goal-of care conversations in patients with advanced cancer, our study extends understanding of dyadic uncertainty in those newly diagnosed with gynecological cancer and who were receiving chemotherapy treatment, and not receiving palliative consultation at the time of data collection. Individuals expressed having different sources of uncertainty, with ambiguity in patients and probability in partners being the most commonly reported. Uncertainty related to ambiguity and probability are irreducible (Han et al., 2011). However, there is lack of focus on how to help people manage irreducible uncertainty in research and in practice.

Although ample evidence has shown that the new diagnosis of gynecological cancer is a family affair and both patients and partners experience uncertainty related to cancer (Senatore, 2013; Zhang, 2017), there is a lack of information about how uncertainty was perceived by patients and partners individually and as a couple. The findings suggest that when presented with the same situation, such as choosing treatment options, the perspectives between patients and partners were not always shared. Due to COVID-19 restrictions, partners were unable to be fully involved in the cancer visits. This made it difficult for patients to narrate and explain their experiences. It was challenging for partners to understand and relate to what the patients were going through. Consistent with prior research on uncertainty management, communication within couples varied in degrees of openness and avoidance when uncertainty was perceived as a threat, such as concerns related to prognosis or treatment outcomes (Tetteh and Akhther, 2021). Similarly, one of the most frequently discussed topics in patients’ interviews was planning for the future as a way to manage uncertainty related to their cancer, aligning with previous findings in gynecological cancer (Bartley et al., 2021; Tetteh and Akhther, 2021). In contrast, partners mentioned they focused more on immediate needs, such as being a supportive caregiver and assuming tasks that had been done by patients prior to their cancer diagnosis. This difference highlights how patients and partners tackle cancer-related uncertainty with distinct focuses and strategies. These findings highlight that uncertainty is a dyadic yet differentiated experience, shaped by both shared circumstances and unique roles within the relationship.

Mishel’s uncertainty in illness theory described uncertainty as an outcome of being unable to assign meanings to cancer experiences (Mishel, 1981). Our findings imply that the fluid nature of patients’ and partners’ experiences are constantly moving along a continuum from certainty to uncertainty, and vice versa. This is consistent with previous concept analyses highlighting the temporal nature of uncertainty related to illness (McCormick, 2002). Similarly, a qualitative study of women with vulvar neoplasia demonstrated this dynamic process, suggesting that uncertainty could be reduced or resolved through external changes, such as recovery from chemotherapy or a positive treatment outcome (Eppel-Meichlinger et al., 2024). People’s knowledge, past experience, and information shared with each other can shift along the spectrum when engaging with new information. The narrative was dominated by interpretation of external information or triggers, such as new gene information that would suggest a different path of treatment and prognosis. Participants shared their need for greater reassurance from healthcare providers to move closer to certainty. Navigating the spectrum of uncertainty is highlighted throughout this study.

Consistent with previous studies, the findings highlight a struggle among partners to balance between family life and work life, as well as the emotional and practical conflict between their roles as partners and supportive caregivers (Akyüz et al., 2008; Petricone-Westwood and Lebel, 2016). This role conflict can create substantial strain, often leaving caregivers feeling overwhelmed by the competing demands of personal well-being, family responsibilities, and the emotional weight of caregiving (Maughan et al., 2002). Research indicates that caregivers experience more uncertainty but receive less support than patients (Guan et al., 2020; Senatore, 2013). While patients may have access to medical professionals, support groups, and clear treatment plans, caregivers are often left to navigate their challenges on their own. Thus, we must address the challenges faced by partners, ensuring they have resources, such as counseling services, support groups, or respite care that helps them assist patients while also maintaining their own quality of life.

In this study, Han’s taxonomy of uncertainty was used primarily as an analytic framework to guide the characterization of uncertainty experience rather than as a tool for theory development. The framework was helpful in dissecting the sources and types of uncertainty, particularly within dyadic contexts. However, the findings extend beyond categorization by highlighting how these types and sources of uncertainty are experienced differently by patients and partners and are shaped by relational and contextual factors, such as caregiving roles and disrupted care settings. Future research may further build on this framework to more fully integrate these relational dimensions into theoretical understandings of uncertainty.

The findings should be interpreted within the context of the COVID-19 pandemic, which shaped participants’ experiences of uncertainty by disrupting care, limiting partner involvement in treatment appointments, and altering family routines. These conditions contributed to increased psychosocial and practical uncertainty, particularly through added complexity in managing caregiving and decision-making. Therefore, the findings may reflect uncertainty experienced during disrupted care contexts. It is important to distinguish pandemic-specific findings from those that may be more generalizable. Experiences such as restricted appointments and home-based learning for kids, and COVID-related risk management are likely context-specific, whereas dyadic differences in uncertainty, emotional responses to prognosis and partners’ work-caregiving strain may extend beyond the pandemic.

Implications for research and practice

Since this study only focused on newly diagnosed patients and their partners, research about uncertainty after active treatment could provide insight into the prolonged effect of uncertainty in couples’ lives. The dyadic differences identified in the study, particularly patients’ focus on ambiguity and partners’ emphasis on probability, highlight the need to address multiple sources of uncertainty for couples. A systematic review and meta-analysis of uncertainty management interventions, including components such as information provision, coping skills training, social support, communication, symptom management, care coordination, and exercise, demonstrated small to moderate effects for both patients and their family members (Zhang et al., 2020). However, more rigorously designed, individualized interventions are needed to target specific sources and issues of uncertainty across the cancer journey.

Moreover, these findings have important implications for practice. Interventions should adopt a dyadic approach, recognizing that patients and partners may experience and prioritize different issues or sources of uncertainty. Clinicians may benefit from addressing both ambiguity (e.g. clarifying complex information) and probability (e.g. discussing risk and prognosis) during consultations. In addition, the practical uncertainty related to work and caregiving responsibilities reported by partner highlights the need to provide support for partners, such as caregiver-focused counseling or resources to help balance work and caregiving responsibilities. Incorporating both patients and partners into communication and decision-making processes may help reduce uncertainty and support adjustment.

Limitations

This study should be interpreted as exploratory in nature, given the small and homogeneous sample of four dyads. The aim was to generate in-depth, dyadic insights into how patients and partners experience uncertainty following a gynecological cancer diagnosis, rather than to achieve broad generalizability. Consistent with qualitative research principles, the focus on a small number of dyads allowed for rich, detailed exploration of nuanced experiences of uncertainty within couples. However, the limited sample size may restrict the transferability of findings, and future research with larger and more diverse samples is warranted. This study was conducted at a single academic medical center with all participants being White, middle-class couples, which limits its generalizability to other settings or racial/ethnic groups. Socioeconomic privilege may have provided greater access to healthcare, social support, and flexibility in planning family and work life, which may influence practical uncertainty especially financial constraints related to healthcare. As recruitment relied on clinic-based referral without tracking of refusals and reasons for declining, these data were not available, which limits our ability to assess potential selection bias. The non-participant couples may have had different uncertainty management experiences. For example, couples who are facing relationship issues may experience more cancer-related uncertainty that negatively impacts their relationship. Although the sample included participants with early-stage, advanced, and recurrent disease, most were newly diagnosed, which may limit the extent to which the findings reflect uncertainty experienced in later stages of the illness trajectory. The lack of racial and ethnic representation may limit the transferability of the study, as racially minoritized patients and their partners may experience uncertainty and concern related to their race within medical institutions. All couples consisted of female patients and male partners, which may reflect gendered patterns in emotional expression and family role assignment. Uncertainty experience may differ in same-sex couples or in relationships where family roles assigned differently. Detailed clinical and demographic information (e.g. cancer stage, prognosis, presence of dependents, relationship duration, and prior health experiences) was not collected to protect participant privacy given the small sample size, which may limit interpretation of factors related to uncertainty. Finally, the study was conducted during the COVID-19 pandemic. This context may have amplified practical and psychological uncertainty, potentially affecting the transferability of the findings beyond similar disrupted care settings. Further research is needed to explore uncertainty in non-disrupted care settings.

Conclusion

This study is the first to explore couples’ experiences of uncertainty across personal, relational, and familial aspects of their lives. Individual differences and commonalities in uncertainty experiences were both noted. It also shed light on how uncertainty affects partners, who receive less attention in both research and practice compared to patients. Future research should focus on intervention development to support both patients and partners.

Supplemental Material

sj-docx-1-hpq-10.1177_13591053261460715 – Supplemental material for Dyadic experience of uncertainty among couples following a gynecological cancer diagnosis

Supplemental material, sj-docx-1-hpq-10.1177_13591053261460715 for Dyadic experience of uncertainty among couples following a gynecological cancer diagnosis by Yingzi Zhang, Rachel Carter, Marie Flannery, Charles Kamen, Heidi Donovan and Sally Norton in Journal of Health Psychology

Footnotes

Acknowledgements

The authors thank Marian Moskow for her assistance in enrollment of study subjects and conducting interviews. The authors are very grateful to all couples who willingly participated in the study.

Author note

This research was conducted at University of Rochester School of Nursing, Rochester, NY. Yingzi Zhang has moved to University of Texas Southwestern Medical Center, Magnet and Nursing Research Department since completing the research.

ORCID iD

Yingzi Zhang

Ethical considerations

This study was reviewed and approved by the University of Rochester Institutional Review Board (Study ID: 00004513).

Consent to participate

All participants provided informed consent prior to participation.

Consent for publication

Consent for publication is not applicable to this article as it does not contain any identifiable data

Author contributions

Yingzi Zhang: conceptualization, methodology, data collect, data analysis, draft preparation, review and final approval, funding acquisition. Rachel Carter: data collection, data analysis, draft review and final approval. Marie Flannery: conceptualization, data analysis, draft review and final approval. Charles Kamen: data analysis, draft review and final approval. Heidi Donovan: data analysis, draft review and final approval. Sally Norton: conceptualization, methodology, data analysis, draft review and final approval.

Funding

The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study is supported by Oncology Nursing Foundation Research Grant (RE01) & Research Support Grant from University of Rochester School of Nursing.

Declaration of conflicting interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Data availability statement

The data that support the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy or ethical restrictions.*

Supplemental material

Supplemental material for this article is available online.

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