Hematological cancers include various heterogenous disease patterns that affect the hematopoietic system. Diseases like lymphoma, multiple myeloma and leukemia differ in treatment, progression, and forecast (Robert Koch Institute & Association of Population-Based Cancer Registries in Germany., 2021). Due to uncertainty about treatment effectiveness and cancer trajectory both patients and spouses suffer from psychological distress (Lambert et al., 2013; Kuba et al., 2019; Raphael et al., 2020). The couple faces new challenges (e.g., lack of knowledge about disease, financial burden), changing roles (e.g., single earner, family roles) and is concerned about their future together (Li et al., 2018; Serçe and Günüşen, 2021). In addition, highly aggressive treatments like high-dose chemotherapy, total body irradiation as well as treatment-related isolation of the patient in the case of stem cell transplantation leads to high burden in couples (Bishop et al., 2007; Beattie and Lebel, 2011).

Coping with cancer and its related burden can take place at different levels. Traditional models such as the transactional stress theory by Lazarus and Folkman (1984) focus on the individual centered view of stress management, in which coping efforts are described as an individual process. Over time dyadic approaches, in which couples respond to a shared stressor through a collaborative process, have gained increasing attention (Bodenmann, 1995). As cancer is a stressor that affects both patients and spouses as well as the close social network, coping and support efforts from all these parties should be considered (Bodenmann, 2005).

Individual coping, dyadic coping, and outside support are exceedingly important for couples facing cancer due to positive effects in adaption to the disease. Individual coping strategies such as reduction of negative mood, positive reappraisal or problem solving were generally associated with less psychological distress, fewer depression and anxiety symptoms (Brandão et al., 2017), higher quality of life, health and relationship satisfaction (Papp and Witt, 2010; Kvillemo and Bränström, 2014; Brandão et al., 2017). However, negative individual strategies like avoidance, denial, or resignation were related to higher psychological distress (Brandão et al., 2017). Dyadic coping strategies like open communication, positive and common dyadic coping were associated with improved relationship functioning and satisfaction, facilitation of couples’ intimacy, higher relationship quality, and fewer depression symptoms (Papp and Witt, 2010; Regan et al., 2014; Rottmann et al., 2015; Traa et al., 2015; Pankrath et al., 2018; Meier et al., 2019; Lupinacci et al., 2021; Ştefǎnuţ et al., 2021). In contrast to the positive effects, higher use of negative coping forms (e.g., avoidant coping), higher level of interference in regular activities, and perception of dyadic support behavior were associated with depression and anxiety in oneself (Lambert et al., 2013; Regan et al., 2014; Rottmann et al., 2015; Bodschwinna et al., 2021). Social support like support from friends, family, or colleagues usually has a buffering effect on depression, anxiety, and distress (Hasson-Ohayon et al., 2010; Fong et al., 2017; Lotfi-Jam et al., 2019; Bodschwinna et al., 2021), with the limitation that this may only be true if the support is wanted (Vodermaier and Linden, 2019). Regarding professional support, interventions appear to be beneficial for patients, spouses and couples and future direction points toward online interventions (Badr and Krebs, 2013; Badr et al., 2019; Luo et al., 2020).

A recent study supports the assumption that different coping strategies occur simultaneously and are used depending on availability (Paschali et al., 2021). This is in line with Bodenmann’s supplement of his sequential stress-coping-cascade model, which suggests that in continuous and cumulative stress situations people draw on different support simultaneously (Bodenmann, 1995, 2005). Furthermore, as individual and dyadic coping strategies are highly associated with each other (Papp and Witt, 2010; Paschali et al., 2021) it might be that combining specific forms of both strategies facilitate adaptation to cancer.

Despite the extensive quantitative research about coping with cancer, there have been fewer qualitative studies in this area. A recent interview study with hematological cancer patients and their family caregivers reported coping strategies like hiding emotions, thoughts and needs, a stronger dyadic relationship than in the past and changed roles within the dyad (Serçe and Günüşen, 2021). A systematic review of qualitative studies of men with prostate cancer identified coping strategies such as avoidance, employing positive focus, support seeking, retain pre-illness lifestyle and symptom management (Spendelow et al., 2018). However, less is known about the specific way in which different categories of coping strategies and support from outside of the couple are used by patients and their spouses as well as about the frequency with which they are used by each.

With the present interview study, we aim to explore how couples, in which one person is diagnosed with hematological cancer, cope individually and together with the disease and what coping and support strategies they use. Furthermore, we want to identify possible differences in coping behavior between the patient and partner. The deeper insights into specific types of coping and support strategies could improve the development of more detailed and tailored intervention programs for patients and their spouses suffering from cancer.

Data of this qualitative study were collected as part of the project ‘Dyadic coping in hematological patients over time’ funded by the Deutsche José Carreras Leukämie-Stiftung between 2012 and 2015 (grant: DJCLS R 12/36). The corresponding multi-center longitudinal study examined a total of 330 couples at baseline and 217 couples at 6-month follow-up regarding their dyadic coping. Associations of dyadic coping with quality of life, relationship satisfaction, supportive care needs and psychological distress were investigated (Ernst et al., 2017; Weißflog et al., 2017; Pankrath et al., 2018; Bodschwinna et al., 2021). Since dyadic coping was a central aspect of the study, additional couple interviews were conducted to gain a deeper insight into the couples’ coping and support network. Ethics approval was obtained from the Ethics Committees of the Medical Faculty of the University of Leipzig (No. 298-12-24092012) and the University of Ulm (No. 243/12) and carried out in accordance with the Declaration of Helsinki.

Coping and support strategies are key factors in improving wellbeing and adjustment in couples facing cancer. The purpose of this qualitative study was to go beyond quantitative data from prior questionnaire studies and to gain deeper insight into the specific strategies that are summarized in the theoretical categories. Compared to our previous quantitative studies (Ernst et al., 2017; Weißflog et al., 2017; Bodschwinna et al., 2021), we were able to confirm the main coping and support categories, as well as show similarities in the distribution of coping and support proportions between patient and partner. In addition, with the deeper insight new distinctions within these categories could be identified as well as the extensive scope of some categories. To our knowledge, this is the first study considering different coping and support strategies in cancer patients and their spouses using a dyadic interview setting.

Not only the frequency of individual coping strategies reported within a subcategory but also the type of strategy differed between patients and spouses. Regarding emotional strategies, patients focused on a variety of activities improving emotional wellbeing, while spouses reported more unfavorably strategies such as rumination or distraction. This is in line with previous research indicating that spouses commonly neglect their own need regarding wellbeing and are always with the patient in thought (Heynsbergh et al., 2019). Differences in problem focused strategies may be explained by role: patients reported more strategies which are directly associated with the diagnosis, while spouses focused more on tasks around and duties to path the way back to everyday life. The realistic approach of patients to the disease has already been reported as a strategy for advanced cancer patients (Walshe et al., 2017). The high level of positive reframing and future plans reported in both patients and spouses may be due to the fact that the majority of patients were in remission and therefore in a positive mood overall. On the other hand, this high level of positivity could be also due to patients’ misunderstanding of their prognosis, which seems to be very common in palliative patients (Jacobsen et al., 2013). Positive reframing in our study was also expressed through gratitude and enjoyment of little things, which is a way of living in the now that has also proven important for patients with advanced cancer (Cottingham et al., 2018).

Open communication is essential for couples coping with cancer (Goldsmith and Miller, 2014; Li et al., 2018), but due to individual differences in couples, research should avoid the general and abstract concept of openness and move on to more differentiated descriptions (Goldsmith and Miller, 2014). As in previous dyadic studies, we found that communication within the dyad can change over cancer trajectory (Siminoff et al., 2020). Communicating stress in particular is positively related to better relationship quality, facilitates couples’ intimacy and reduced distress (Badr et al., 2018; Lupinacci et al., 2021; Ştefǎnuţ et al., 2021). The relaxing effect of stress communication was also reported by patients in our study, while some spouses complained about how burdensome patients’ stress communication was for them. To address these differences, couple-based interventions should change the generic notion of open communication into more individual approaches (Badr, 2017).

Because of the role-effect it is not surprising, that spouses provided more supportive dyadic coping than patients (Kroemeke et al., 2019). Spousal support was especially strong in the post-diagnosis period and during hospitalization (Antoine et al., 2013), while patients tried to reestablish support after recovery and return home (Kroemeke et al., 2019). Being there for the patient was a salient issue for the couple, helping both not to feel alone. Besides supportive behavior, spouses also took over tasks completely when the patients were unable to do so (Palmer Kelly et al., 2019). Thus, spouses may also worry about being perceived as caregivers only which may turn the relationship out of balance (Serçe and Günüşen, 2021).

The overall less reported negative dyadic coping may likely be due to a selection bias given that well-functioning couples might have been more willing to be interviewed. The fact that the interview was conducted jointly with both partners might additionally have reduced the chance to observe negative dyadic coping. Apart from this reasoning well-intentioned support from spouses can also cause negative acknowledgment from patients, if support does not match patient’s needs (Palmer Kelly et al., 2019).

Within common dyadic coping, which was the most frequent coping strategy in our sample, cohesion in relationship was important in all couples and manifested in various manner. In addition to joint activities, it also seems to be essential to jointly distance oneself from negative and stressful things. Through all these experiences, couples achieve mutual growth, more intimacy and improvement in their relationship (Beattie and Lebel, 2011; Hasson-Ohayon et al., 2016; Lupinacci et al., 2021; Serçe and Günüşen, 2021). In addition, the couples could be divided into two groups: those who wanted to return to normality of the everyday life (Antoine et al., 2013) and those who wanted to discover new things together. This distinction in different future plans was also partially reflected in the individual coping strategies.

Like in our previous quantitative study as well as in other studies, spouses in the present sample reported less direct social support from friends and family compared with patients (Hasson-Ohayon et al., 2010; Bodschwinna et al., 2021). Nevertheless, instrumental social support for the patient can also be indirectly relieving for the spouse. Support from friends and family is perceived as helpful by most patients, while some recommendations cause patients to feel pressure. Therefore, it seems that social support should also meet the expectations or needs of patients in order to be beneficial (Reynolds and Perrin, 2004; Vodermaier and Linden, 2019). Over time social networks changed and received social support decreased for some of the participants, which can be due to burnout of support providers or because patients no longer needed outside support (Arora et al., 2007; Palmer Kelly et al., 2019). Professional support is widely used in couples. Spouses in our sample were more likely to go to psychotherapist, while patients reported more instrumental help from social workers. More proactive support offers in general and psychological support for the spouses were desired, as perception of available support is low (Li et al., 2018; Heynsbergh et al., 2019).

The combination of deductive and inductive categorization strategies is clearly the strength of the present qualitative study. This approach is well in line with previous research and theories, and additionally allows for more flexibility in identifying additional subcategories. Furthermore, the dyadic interview setting has the advantage to explore coping and support strategies of the couple with both partners together, since they also concern both of them. Some limitations of the study should be considered. Given that both partners had to agree to participate, there may be a selection bias in the sample toward couples who are in highly functional relationships and tend to communicate more openly. Furthermore, the high dropout rate is to be considered as a limitation. The reasons for this probably lie in the logistical challenge for the couples to appear together for an on-site appointment. Due to the large catchment area of the clinics, long distances often also had to be covered. Another limitation is, that the assumption of theoretical data saturation after 10 interviews did not follow the typical process. Initially, an unexpected high percentage of the couples approached declined to participate. Only subsequently re-recruitment was declined, as a review of the processed interviews revealed that no significant new information had been added in the most recent interviews. The ineffectiveness of the expense allowance may be due to the fact that a financial incentive is not a consideration for couples facing life-threatening cancer. Conducting the interview together may also have resulted in social desirability influencing the two partners’ communication. While an effort was made to include heterogenous couples, some important variables were not considered. Therefore, our sample consisted mainly of patients in remission and the currently attenuated symptoms could account for the low proportion of negative coping strategies reported. Furthermore, generalization of our findings to other cancer types is not applicable, as this study was conducted only with hematological cancer patients and their partners.

Couples facing cancer use a variety of different coping and support strategies. In this context, patients and spouses differ in some of their used strategies and received support. Clinicians should keep track of the strategies used, intervene when they prove not to be useful, and recommend tailored improvement of the strategies. First, open communication should not be generally recommended, as stress communication has been shown to be both beneficial and burdensome (Badr, 2017). Furthermore, it should be highlighted, that we could identify two different types of future plans in couples: returning to normality and reaching out for new goals. These new insights could serve as a new direction for couple interventions by adding tools that help realizing the couples’ individual plan for the future. Tailored support in couple-based online interventions could be a suitable implementation for this purpose (Luo et al., 2020). In addition, health care system should provide more proactive offers for psychosocial support for spouses, as their suffering still seems to be rather neglected. Emotional coping, in particular, should be improved in spouses, as they used very few strategies to relax and to improve their own wellbeing. Especially during the patients’ hospitalization, clinicians should observe spouses’ condition and recommend appropriate support services.

We identified various coping and support strategies regarding individual coping, dyadic coping, and outside support. Most of them were perceived as beneficial, but some triggered pressure. With qualitative research we were able to get a more detailed and deeper insight into the different strategies. For example, common dyadic coping showed various facets that a representation with a numerical value could not do justice to. We were also able to identify some differences in patient and spouse strategies that should be considered in couple intervention development. Further research in the area of coping and support strategies could gain even deeper insights by examining real-time interactions between patients and spouses (Lau et al., 2019).

Data are only available from the corresponding author on request, because of privacy or ethical restrictions.

The studies involving human participants were reviewed and approved by Ethics Committees of the Medical Faculty of the University of Leipzig (No. 298-12-24092012) and the University of Ulm (No. 243/12). The patients/participants provided their written informed consent to participate in this study.

JE, GW, KH, and HG were responsible for funding and design of the study. AM-T, DN, and HD supervised design and conduction of the study in terms of psychological or hematological expertise. GW, JE, KH, and DB were responsible for recruiting participating couples and conducting the interviews. DB was responsible for the evaluation method and the development of the code system, performed the first coding of the interviews, supervised and contributed to the qualitative data analysis and interpretation, performed the quantitative analysis, and drafted the manuscript. UG was responsible for second coding of the interviews. All authors have read the manuscript critically and approved the final manuscript.

The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

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