Open Communication and Physical Intimacy in Young and Midlife Couples Surviving Cancer Beyond the First Year of Diagnosis

Abstract

It is estimated that there will be more than 22 million cancer survivors by 2030 (American Cancer Society, 2019). However, the incidence rate of cancer is still high (Siegel et al., 2020), which indicates that more people diagnosed with cancer and their partners are surviving a cancer experience and learning to live with the long-term effects. There is extensive research about the effect cancer has on a couple’s life, but very little is known about longer-term effects on the couple because the majority of cancer research has been done during the first year of diagnosis or treatment (Chambers et al., 2015; Wittmann et al., 2013). In addition, most dyadic cancer research has focused on physical health and symptoms, such as pain (Haun et al., 2014; Lyons et al., 2014; Magsamen-Conrad et al., 2015), and mental health of the couple (e.g., depression, anxiety) (Falconier & Kuhn, 2019; Rottmann et al., 2016; Segrin & Badger, 2014; Shaffer et al., 2016), with far less focus on the impact of cancer on couples’ sexual health. Sexuality and sexual health are central to psychological health (World Health Organization, 2017). Cancer research has consistently shown sexual health and physical intimacy to be important to cancer survivors and their partners, and they are often cited as areas of unmet need during the cancer trajectory (Gorman, Smith, et al., 2020; Lindau et al., 2011; Reese et al., 2019). It is common for cancer survivors to experience sexual health problems, including negative body image, loss of sexual desire, and partner rejection (Gandhi et al., 2019; Sun et al., 2016), which can continue even after the completion of treatment and can negatively alter the couple’s sexual life long term (Gorman, Smith, et al., 2020). Partners may also face difficulties in resuming sexual activities because they are afraid of hurting the cancer survivor (Enzlin et al., 2017). Even after cancer treatment, partners may still fear resuming their sexual life with the cancer survivor for the following reasons: believing that initiating sexual activity is inappropriate, fear of rejection, and guilt toward their sexual needs (Enzlin et al., 2017). There is strong evidence of the interdependent nature of mental and physical health within couples and the protective role of collaborative and dyadic coping behaviors (Falconier & Kuhn, 2019; Langer et al., 2017; Lee & Lyons, 2019). For example, couples with high levels of collaboration, open communication, and supportive behaviors about cancer when dealing with illness tend to have improved health and relational outcomes (Li & Loke, 2014; Milbury & Badr, 2013; Oh & Ryu, 2019; Regan et al., 2015; Traa et al., 2015). A well-illustrated example of this is a study by Manne et al. (2015) that found that holding back communication within couples involving a patient with prostate cancer was associated with worse psychological stress. The longer-term effect of couples’ open communication or withholding communication about sexual health after cancer is still largely unknown. Although dyadic researchers have uncovered important facets of the impact of cancer on couples’ sexual health (Bois et al., 2013; Gorman, Smith, et al., 2020), there is still limited research that has focused on longer-term effects and associated modifiable factors. The current study tackles an important gap in the literature by examining the impact of open communication about cancer in general on physical intimacy (affectionate and sexual behaviors) in young and midlife couples one to three years postdiagnosis of cancer. Cancer research that has included younger couples, those aged younger than 40 years, often does not specifically target the developmental stage of people aged 21–39 years, making it harder to draw conclusions about couples in this age range. However, developmental stage plays an important role, particularly for couples experiencing illness at an unexpected time in the life course (i.e., off-time). For example, in a study by Acquati and Kayser (2019), couples aged younger than 40 years had significantly higher depressive symptoms, clinical depression, and anxiety than couples aged 40 years or older. Previous research has suggested that younger couples are at high risk of developing worse outcomes, such as psychological stress and sexual issues, because of the lack of adjustment to the unexpected (off-time) health crisis (Berg & Upchurch, 2007; Manne et al., 2015), which could be due to the lack of well-formed coping behaviors for the couple (Berg & Upchurch, 2007). It can be particularly difficult for younger couples to adapt to sexual problems (Gorman, Drizin, et al., 2020; Gorman, Smith, et al., 2020). There are several dyadic frameworks that have contributed to the dyadic science of illness during the past two decades, including work by the current authors. The current study is guided by the theory of dyadic illness management, which proposes that couples who collaborate and work together as a team will have better outcomes (Lyons & Lee, 2018). A notable strength of the theory is that there is a focus on the health of the dyad as a unit and the roles of shared appraisal and collaboration on optimizing dyadic health outcomes. In addition, the theory includes risk and protective contextual factors at the individual (e.g., sex), dyadic (e.g., developmental stage of the couple), familial (e.g., family support), and cultural (e.g., collective versus individualistic culture) levels. The theory was recently explored in a qualitative study of sexual health in young couples with cancer, which found that more collaborative management and open communication about sexual health was associated with more positive sexual health for the couple (Gorman, Smith, et al., 2020). The current study builds upon this work to examine the association between two types of communication within young and midlife couples surviving cancer and engagement in physical intimacy behaviors. Specifically, the authors aimed to examine whether active engagement (i.e., open communication) and protective buffering (i.e., concealing and avoiding communication) were associated with affectionate and sexual behaviors in young and midlife couples beyond the first year of diagnosis, controlling for the age and sex of the cancer survivor. The authors hypothesized that young and midlife couples who perceived their partner to engage in more active engagement (i.e., open communication) or less protective buffering (i.e., hiding worries or avoiding communication) would report greater levels of affectionate and sexual behaviors as a couple. Methods Participants and Procedures Current data are drawn from a pilot study exploring the longer-term impact of cancer on young and midlife couples in urban and rural areas in Oregon (Lyons et al., 2021). Couples were eligible to participate if (a) the cancer survivor had been diagnosed with a primary invasive cancer in the past one to three years, (b) both the cancer survivor and their partner were aged from 21 to 58 years, (c) both were able to speak and read English, and (d) both had access to a telephone and had resided together for at least one year. The term “partner” was used throughout the study to refer to a spouse or intimate partner residing with the cancer survivor. Couples included unmarried and same-sex partners. Couples were recruited through the Oregon State Cancer Registry using targeted mailings across the state of Oregon to cancer survivors who met initial eligibility criteria (i.e., diagnosis, time since diagnosis, age, and zip code). Strategic mailings to cancer survivors within rural and urban designated areas was purposeful, given the parent study’s goal to examine rural–urban differences. The recruitment procedure followed the standard protocol used by the cancer registry. The registry directly mailed letters to only those cancer survivors who had consented to be informed about research opportunities. Recruitment letters included contact information for the research team at Oregon Health and Science University in Portland. Interested participants were screened by telephone. For couples who were eligible and agreed to participate, a packet containing separate surveys for the cancer survivor and partner and separate consent forms was mailed to the couple. Couples were instructed to complete the surveys separately and return them, along with signed consent forms, in the provided stamped and addressed envelopes. These procedures are similar to those used by the current research team in all couple research and dyadic research at large. The study was approved by the institutional review board at Oregon Health and Science University (no. e15498). A total of 160 cancer survivors made contact with the study team. During telephone screening, 48 cancer survivors were screened as ineligible (38% did not have a partner; 40% did not meet the age criterion; and 22% did not meet diagnosis criteria, could not read English, or the survivor had died). An additional 33 of the 160 cancer survivors could not be reached with several attempts, and 2 declined to participate. After screening for eligibility, 77 couples were mailed surveys. Although the authors received surveys and consent forms for 57 cancer survivors and 56 partners, only 49 couples had complete data and consent forms and were included in the current analysis. Measures Active engagement was assessed using the five-item subscale of the Dyadic Coping measure (Buunk et al., 1996; Hagedoorn et al., 2000). Active engagement assesses the extent to which the cancer survivor and partner view each other’s active involvement and support (e.g., “my partner tries to discuss cancer with me openly,” “my partner asks me how I feel”) (Buunk et al., 1996; Hagedoorn et al., 2000). Responses are rated on a five-item Likert-type scale from 1 (never) to 5 (very often), with higher scores indicating higher levels of perceived active engagement by one’s partner. This subscale has exhibited high Cronbach’s alphas (0.77–0.97) in studies of couples with cancer (Hagedoorn et al., 2000; Hinnen et al., 2007), including in the current study (cancer survivor: Cronbach’s alpha = 0.89; partner: Cronbach’s alpha = 0.81). Protective buffering was assessed using the six-item subscale of the Dyadic Coping measure (Buunk et al., 1996; Hagedoorn et al., 2000). Protective buffering assesses the extent to which the cancer survivor and partner view each other’s use of hiding concerns and denying worries (e.g., “my partner tries to hide his or her worries about me,” “my partner just waves my worries aside”) (Buunk et al., 1996; Hagedoorn et al., 2000). Responses are rated on a five-point Likert-type scale from 1 (never) to 5 (very often), with higher scores indicating higher levels of perceived protective buffering by one’s partner. This subscale has shown high Cronbach’s alphas (0.75–0.87) in studies of couples with cancer (Hinnen et al., 2007), including in the current study (cancer survivor: Cronbach’s alpha = 0.77; partner: Cronbach’s alpha = 0.65). The Physical Intimacy Behavior Scale measures the frequency with which couples engage in four affectionate (i.e., touching, kissing, hugging, and caressing) and two sexual (i.e., sexual intercourse and foreplay) behaviors (Druley et al., 1997). The questions are measured on a four-point Likert-type scale from 1 (none of the time) to 4 (most or all of the time), with higher scores indicating greater engagement. The affectionate and sexual behavior subscales have demonstrated strong internal consistency and construct validity in women with chronic pain (Druley et al., 1997) and couples surviving cancer (Lyons et al., 2016), including in the current sample (cancer survivor affectionate behaviors: Cronbach’s alpha = 0.94, partner affectionate behaviors: Cronbach’s alpha = 0.94; cancer survivor sexual behaviors: Cronbach’s alpha = 0.92; partner sexual behaviors: Cronbach’s alpha = 0.94). Analysis Descriptive statistics were measured using IBM SPSS Statistics, version 26.0, to characterize couples in the sample. Paired-samples t tests were used to examine differences between cancer survivors and partners on continuous level variables, given the non-independent nature of the data. Multilevel modeling was measured using Hierarchical Linear Modeling, version 7.2, to analyze physical intimacy data at the level of the couple to control for interdependencies between cancer survivor and partner data (Lyons & Lee, 2020; Lyons & Sayer, 2005). Multilevel modeling has several advantages for the analysis of dyadic data. The dyad is considered to be the unit of analysis rather than the individual cancer survivor or partner. In addition, these dyadic models control for the interdependence in outcomes within the couple (i.e., physical intimacy behaviors). Finally, actor (e.g., cancer survivor communication variables predicting cancer survivor physical intimacy behaviors) and partner effects (e.g., partner communication variables predicting cancer survivor physical intimacy behaviors) can be examined. Two unadjusted (i.e., no covariates) within-dyad models were run to estimate the population averages of both physical intimacy subscales (i.e., affectionate behaviors and sexual behaviors) within couples. Adjusted between-dyad models were run to examine the roles of (a) active engagement on both physical intimacy subscales and (b) protective buffering on both physical intimacy subscales for a total of four models. Each of these between-dyad models consisted of simultaneous regression equations for cancer survivors and their partners controlling for survivor age and sex. Hierarchical Linear Modeling uses full-information, maximum-likelihood estimation, which approximates parameter values based on available data to obtain unbiased estimates. Finally, given the small sample size in this study, effect sizes (r) were calculated and reported in tables using Cohen’s r guidelines of r = 0.1 (small), r = 0.3 (medium), and r = 0.5 (large). Results 1 the for the sample of 49 couples and variables in this Cancer survivors on aged years = with of the sample aged from to 40 Cancer survivors were and in an urban with a or cancer was the most reported of cancer. Couples had resided together for an of years = The sample one same-sex couple. The time since diagnosis was years = Cancer survivors and their partners did not significantly in how they in physical intimacy behaviors (affectionate or sexual behaviors) with each Cancer survivors and partners also did not significantly in how they perceived each in open communication (i.e., active However, cancer survivors were significantly more to their partners as in protective buffering behaviors than their partners perceived 2 the for predicting couple engagement in affectionate controlling for sex and age of the cancer survivor. Results of the first two actor effects. the cancer of their active engagement significantly levels of affectionate behaviors by the cancer survivor effect size = The more the cancer survivor perceived their partner to with them, the more often the cancer survivor reported in affectionate behaviors with their partner. the of the cancer active engagement significantly levels of affectionate behaviors by the partner effect size = The more the partner perceived the cancer survivor to with them, the more often the partner reported in affectionate behaviors with the cancer survivor. The the of protective buffering on affectionate behaviors. There were no between protective buffering and affectionate behaviors for cancer survivor or partner. The age of the cancer survivor was significantly associated with engagement in both affectionate behaviors by both of the couple. The the cancer the less the couple in affectionate behaviors with each the for predicting couple engagement in sexual controlling for the sex and age of the cancer survivor. Results of the first one actor The of the cancer survivor of their active engagement significantly levels of sexual behaviors by the cancer survivor effect size = The more the cancer survivor perceived their partner to with them, the more often the cancer survivor reported in sexual behaviors with their partner. In addition, a effect size was for the of the cancer open communication on partner sexual behavior size = The the of protective buffering on sexual behaviors. There were no between protective buffering and sexual behaviors for of the couple. The age of the cancer survivor was significantly associated with survivor engagement in sexual behaviors. The the cancer the less often they in sexual behaviors with the partner The current study is the first known to examine the roles of active engagement and protective buffering on affectionate and sexual behaviors in a rural–urban sample of young and midlife couples surviving cancer beyond the first year of are Although both cancer survivors and partners perceived each to engage in similar levels of open communication (i.e., active cancer survivors perceived their partners to engage in significantly more concealing and avoiding communication than their partners did of there were no differences in level of engagement in affectionate or sexual behaviors reported by cancer survivors or partners. open communication to a more important role in physical intimacy of the couple than hiding worries or avoiding Finally, from this study that one’s of how one’s partner is more for in physical intimacy than one’s open communication known as active and protective buffering are two types of dyadic coping behaviors by dyadic and frameworks as couples and with illness (Berg & Upchurch, 2007; Lyons & Lee, Regan et al., 2015). is not considered to be the of the The current support these roles because each of dyadic communication a role in of physical intimacy within the couple. open communication about cancer in general did not specifically sexual health or physical but couples may have about these when a role in engagement in physical intimacy within protective buffering did This that it is not to the level of protective buffering behaviors that of the couple engage in to physical in open communication with one’s partner the of cancer may the and relational and that are important for physical These not only the roles of these of within the but also the of couple communication for outcomes. Protective buffering and of worries and concerns have shown strong with greater depressive and negative health outcomes (Lyons et al., 2020), those behaviors may a more role for the communication and management of illness and within the couple. both forms of communication are important for optimizing the and relational health of the in of open communication were reported as similar within couples in the current but cancer survivors perceived their partner to more and more than their partners perceived Partners often to how to support their partner with cancer or how they discuss the cancer rather than from the partners are more to to the rather than in that has been found to be particularly important to cancer et al., 2020). Although it is that sex a role (most partners were the models for sex of the cancer survivor. It may be more that the role of a partner to greater or holding back in communication to the cancer survivor more than the cancer survivor (Enzlin et al., 2017; Manne et al., 2020). more research is to the factors associated with protective buffering in young and midlife couples surviving cancer. Results from this study also that about a communication to be most for physical intimacy (affectionate and sexual behaviors) than perceived as by one’s partner. Although these the communication was assessed in the current study (i.e., measures each of the couple to rate their it is that the or appraisal of one’s communication is more than one’s communication behaviors for physical The that one’s partner is (e.g., to discuss the cancer with me,” me how I of me I not may be an important of the supportive behaviors and collaboration that and physical The support the need for dyadic communication and supportive behaviors within couples surviving cancer. of the couple more in physical when they perceived more open communication from their partner. However, only cancer survivors were more to engage in sexual behaviors when they perceived more open communication from their partner. such association was found for partners. with research (Enzlin et al., this may be of a or on the of partners to sex because of guilt or sexual of the sexual are often for couples surviving cancer (Enzlin et al., 2017). studies examine whether couples with sexual health more from dyadic targeted at communication sexual rather than more communication about cancer (Gorman, Drizin, et al., 2020; Gorman, Smith, et al., 2020). The age of the cancer survivor was significantly associated with engagement in affectionate and sexual behaviors. Specifically, partners were significantly less to engage in affectionate and cancer survivors were significantly less to engage in sexual behaviors. It is difficult to conclusions about the role of developmental given the small sample but research is to the role of age in physical intimacy for couples with cancer. and The current study has several that be the sample size is which limited the of variables included in the and did not for of the roles of age or sex of cancer The parent study was a and it is of the effect that there was not to all in the current analysis. and more are to and the in this the were and guided by the theory of dyadic illness management, the study was the authors of the research that the modifiable risk and protective factors associated with long-term couple outcomes is the nature of the analysis limited the variables that were available to The authors also need to that the sample was the authors to or work is to upon these and these to this important of study, particularly in and these and the nature of this study, there are several notable and of this studies have younger couples surviving cancer beyond the first year of The current study explored the role of two types of communication on the physical intimacy of young and midlife couples one to three years there has been a in studies specifically young and young couples with cancer, there is still very little known about this The current study targeted young and midlife couples, and 21 of 49 couples were aged from to 40 research is to more to couples across the life to to the needs and of couples at developmental most studies of couples with cancer focus on or prostate cancer that role and sex are The current study included several cancer that sex of the cancer survivor could be from the for This study also has and clinical the study strong evidence for the theory of dyadic illness management (Lyons & Lee, and work by Gorman, Smith, et al. for sexual health by the of collaborative dyadic management such as open communication within the couple. research in this is to this work in more and to these within couples from work is to examine these the cancer trajectory to whether these protective effects are given the nature of cancer for young and midlife couples and the of communication and for research that the roles of age and sex may to Finally, this study additional evidence for the need for dyadic to the health of the couple surviving cancer. dyadic that focus on the of sexual health and physical intimacy for the couple could be for and This study focused on the impact of active engagement and protective buffering on physical intimacy in young and midlife couples surviving cancer beyond the first year of The evidence that the negative impact of cancer not only past treatment, but also both of the couple. It is for to partners in clinical and The current support for the for to the couple as the unit of can a role in the of the couple and about the impact of cancer on both of them, the couple’s needs and support and are to the concerns of the who is often during the cancer The authors the couples who and for the support of the at the Oregon State Cancer the is an in the of at of Science in Gorman, is an in the of Health and at Oregon State University in is a in the of at Oregon Health and Science University in and Lyons, is a in the of at in This research was in by the Oregon and Lyons contributed to the and the data Lyons provided support and analysis. Gorman, and Lyons contributed to the can be reached at with to

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