Introduction
Family caregivers have experienced a variety of emotional distresses throughout the illness trajectory of patients with advanced cancer and the dying process. Previous studies reported that family caregivers of patients with advanced cancer had more health problems and psychological distress (Choi et al. Reference Choi, Hwang and Hwang2016; Emanuel et al. Reference Emanuel, Fairclough and Slutsman2000; Garrido and Prigerson Reference Garrido and Prigerson2014; Hudson et al. Reference Hudson, Thomas and Trauer2011; King et al. Reference King, Vasanthan and Petersen2013; Latham and Prigerson Reference Latham and Prigerson2004; Song et al. Reference Song, Shin and Choi2011; Tomarken et al. Reference Tomarken, Holland and Schachter2008; Utne et al. Reference Utne, Miaskowski and Paul2013). In Japan, 41–47% of family caregivers of patients with cancer in palliative care units (PCUs) had depressive symptoms severe enough to warrant a diagnosis of a major depressive disorder (Sachida et al. Reference Sachida, Ohtsubo and Kanaishi2016; Shimizu et al. Reference Shimizu, Hayashi and Maeda2022).
Coping supports are important in palliative care practice because they improve quality of life (QoL) and depression (Greer et al. Reference Greer, Applebaum and Jacobsen2020, Reference Greer, Jacobs and El-Jawahri2018; Nipp et al. Reference Nipp, El-Jawahri and Fishbein2016a). Furthermore, these supports are available not only to patients but also to family caregivers (Greer et al. Reference Greer, Applebaum and Jacobsen2020; Nipp et al. Reference Nipp, El-Jawahri and Fishbein2016b). To cope with stressful situations, patients with advanced cancer and family caregivers use a variety of coping styles with various outcomes, including QoL, depressive and anxiety symptoms, and illness understanding (Greer et al. Reference Greer, Applebaum and Jacobsen2020). Some coping styles contribute to positive outcomes, while others do not (Greer et al. Reference Greer, Applebaum and Jacobsen2020). In the early palliative care interventions, the use of adaptive coping styles is encouraged, which improves outcomes such as QoL and depression (Greer et al. Reference Greer, Applebaum and Jacobsen2020). Furthermore, family caregivers’ coping styles are important, as patients’ and family caregivers’ coping styles influence each other’s outcomes (Greer et al. Reference Greer, Applebaum and Jacobsen2020; Nipp et al. Reference Nipp, El-Jawahri and Fishbein2016b). Therefore, it is important to consider which types of coping are appropriate to encourage in order to alleviate the distress of family caregivers.
Resilience is an important concept related to coping styles in stressful situations. It is the dynamic capacity of an individual to maintain or regain mental health following a stressful or traumatic experience (Rutter Reference Rutter1993). Factors related to resilience among the caregivers of patients with cancer include caregivers’ social support (Chen et al. Reference Chen, Wang and Li2021; Reference Chen, Huang and Hung2020; Hwang et al. Reference Hwang, Kim and Lee2018), caregivers’ family function (Hwang et al. Reference Hwang, Kim and Lee2018; Wang et al. Reference Wang, Yue and Ren2021), patients’ performance (Chen et al. Reference Chen, Huang and Hung2020; Hwang et al. Reference Hwang, Kim and Lee2018), caregivers’ age (Simpson et al. Reference Simpson, Dall’Armi and Roydhouse2015), caregivers’ health status (Hwang et al. Reference Hwang, Kim and Lee2018), caregivers’ self-esteem (Hwang et al. Reference Hwang, Kim and Lee2018), caregivers religious (Krok et al. Reference Krok, Zarzycka and Telka2021), caregivers hope (Krok et al. Reference Krok, Zarzycka and Telka2021), caregivers positive/negative affect (Krok et al. Reference Krok, Zarzycka and Telka2021), patients age (Chen et al. Reference Chen, Huang and Hung2020), caregivers level of education (Chen et al. Reference Chen, Huang and Hung2020), and caregivers financial problem (Hwang et al. Reference Hwang, Kim and Lee2018).
In a previous study, we found that higher preloss resilience reduced the impact of preloss emotional distress on bereavement outcomes, such as complicated grief and depression (Shimizu et al. Reference Shimizu, Hayashi and Maeda2022). In general, adaptive coping styles are associated with higher resilience (Connor and Davidson Reference Connor and Davidson2003; Haglund et al. Reference Haglund, Nestadt and Cooper2007; Southwick et al. Reference Southwick, Bonanno and Masten2014; Southwick and Charney Reference Southwick and Charney2018; Stewart and Yuen Reference Stewart and Yuen2011). Therefore, enhancing resilience by providing support that encourages specific coping styles may help alleviate emotional distress. Adaptive coping is positively correlated with higher resilience in medical students (Beg et al. Reference Beg, Kanwal and Karmani2024), in patients with breast cancer (Wu et al. Reference Wu, Liu and Li2016), in primary caregivers of patients with schizophrenic (Wu et al. Reference Wu, Liu and Ma2021), in caregivers of patients with hematopoietic stem cell transplantation (Luo et al. Reference Luo, Zhang and Liu2020), and in cancer survivor couples (Lim et al. Reference Lim, Shon and Paek2014), while avoidant and emotionally focused coping is negatively correlated with lower resilience in medical students (Beg et al. Reference Lim, Shon and Paek2024). To the best of our knowledge, no reports have identified an association between resilience and specific coping in family caregivers of terminally ill patients with cancer. Therefore, the relationship between resilience and coping style needs to be clarified. The research framework we developed is shown in Fig. 1.
The research framework of this study.
The aims of this study were to investigate the relationship between resilience and coping styles in family caregivers of terminally ill patients with cancer.
Methods
This is a cross-sectional questionnaire survey of family caregivers of terminally ill patients with cancer who treated in 4 PCUs from December 2016 to January 2018. The participants served as the baseline for the cohort study to determine the impact of preloss resilience on changes in depression before and after bereavement (Shimizu et al. Reference Shimizu, Hayashi and Maeda2022).
Participants and procedure
Primary family caregivers of terminally ill patients with cancer who were admitted to 1 of the 4 Japanese PCUs were eligible to participate. The inclusion criteria were as follows: (1) primary family caregivers, who responded to be the family member most involved in the patient’s care during the last few weeks of life; (2) patients and family caregivers aged 20 years or older; and (3) patients admitted to the PCUs before January 29, 2018. The exclusion criteria were as follows: (a) family caregivers who were considered unfit to participate in the study by the primary physician due to serious psychological symptoms; (b) family caregivers unable to complete the self-report questionnaire due to linguistic and health issues (e.g., cognitive impairment or visual deficit); and (c) a length of stay of <48 h. All participants provided written informed consent prior to study inclusion. They were asked to return their completed questionnaires to the research office via mail.
The study was approved by the institutional review boards of Tohoku University School of Medicine (IRB approval ID: 2016-1-409, 2017-2-236-1) and all participating institutions (St. Luke’s International Hospital, Gratia Hospital, and National Cancer Center).
Measurements
The questionnaire was developed based on a literature review and several multidisciplinary focus group discussions with nurses, psychologists, psychiatrists, and researchers, followed by cognitive interviews with the 10 participants after they completed the questionnaire.
Resilience: Connor–Davidson Resilience Scale-25
The 25-item Connor–Davidson Resilience Scale (CD-RISC) (Connor and Davidson Reference Connor and Davidson2003; Ito et al. Reference Ito, Nakajima and Shirai2010) is a widely used scale in which each item was rated on a 5-point Likert scale ranging from “0” (not true at all) to “4” (true nearly all of the time); the higher the scores, the greater the resilience (range, 0–100). The scale was rated based on how the respondent felt about functions, such as: “Able to adapt to change,” “Can deal with whatever comes,” “See the humorous side of things,” in the previous month (Connor and Davidson Reference Connor and Davidson2003). This scale, as well as its Japanese version, has been proven to be reliable and valid (Connor and Davidson Reference Connor and Davidson2003; Ito et al. Reference Ito, Nakajima and Shirai2010). Cronbach’s alpha coefficient is 0.95 for general and 0.90 for university students in Ito et al.’s study (Ito et al. Reference Ito, Nakajima and Shirai2010).
Coping styles: Brief Coping Orientation to Problem Experienced
The Brief Coping Orientation to Problem Experienced (B-COPE) is a 28-item questionnaire that assesses 14 conceptually different coping styles: active coping, planning, positive reframing, acceptance, humor, religion, emotional support use, instrumental support use, self-distraction, denial, venting, substance use, behavioral disengagement, and self-blame (Carver Reference Carver1997; Otsuka et al. Reference Otsuka, Suzuki and Takada2008). Each coping subscale consists of 2 items on a 4-point Likert-type scale ranging from “1” (I haven’t been doing this at all) to “4” (I have been doing this a lot). This scale, as well as its Japanese version, has been proven to be reliable and valid (Carver Reference Carver1997; Carver et al. Reference Carver, Scheier and Weintraub1989; Otsuka et al. Reference Otsuka, Suzuki and Takada2008).
Locus of control: Health locus of control scale
From the existing Japanese version of the Health Locus of Control Scale (Horike Reference Horike1991), 1 item related to the chance locus of control, 1 item related to the God locus of control, which means attribution to God, Buddha, and other deities, and 1 item related to an internal locus of control were extracted and used. Specifically, the following questions were asked: “Do you think you are lucky to be in good health?”; “Do you think that if you make offerings to God and Buddha and ask for their protection, they will protect you from illness?”; and “Do you think it depends on your own efforts whether your illness gets better or not?” and they were rated on a 4-point Likert scale ranging from “1” (disagree) to “4” (agree). Higher scores indicate a proclivity to attribute to the relevant locus of control.
Family caregivers’ characteristics
Participants were asked to provide their own sociodemographic information such as age, sex, relationship with the patient (partners, children, etc.), whether they lived with the patient, educational level, religious belief, frequency of worship or visiting religious places, belief about staying with them in the patient’s spirit after bereavement, whether he or she lived with the patient, attendance frequency, history of psychotropic drug use, and history of psychiatric visits and perceived social support (feelings of being loved and cared for and perception that their concerns or problems are being recognized). Participants were also asked to provide the patient’s background characteristics, such as age, sex, primary tumor site, time intervals since cancer diagnosis, number of people living with the patient, marital status, and household income.
Statistical analysis
First, descriptive analyses of demographic characteristics, individual resilience degree as assessed by the CD-RISC, and frequency of use of each coping style as assessed by the B-COPE were performed. Next, to clarify factors associated with resilience among family caregivers of terminally ill patients with cancer, Spearman’s rank correlation coefficients were calculated for each item on the CD-RISC total score, including family caregivers’ characteristics and the health locus of control. Furthermore, to identify coping styles that family caregivers with higher resilience tended to use, Spearman’s rank correlation coefficients for resilience and coping styles were calculated. After that, the partial Spearman’s rank correlation coefficient was calculated and adjusted for the factors that were significantly correlated with resilience. All analyses were performed using the statistical package SAS, Version 9.4 (SAS Institute Inc., Cary, NC). The significance level was set to a p-value of <0.05 (2-tailed).
Results
Of the 417 family caregivers who met the selection criteria, the questionnaires were distributed to 317 caregivers (76.9%) who provided consent, and 291 of them (69.8%) were returned (Fig. 2). Table 1 summarizes the background data of the patients and their family members.
Study flow chart of family caregivers of patients with cancer.
Characteristics of patients and family caregivers
B-COPE, Brief Coping Orientation to Problem Experienced; CD-RISC, ConnorDavidson Resilience Scale-25; LOC, locus of control; SD, standard deviation.
Resilience among family caregivers and its association with other factors
The mean CD-RISC score was 56.2 (standard deviation: 16.13). In correlation analyses (Table 2), higher resilience was associated with an internal locus of control (Spearman’s ρ = 0.13, p = 0.035), higher educational levels (ρ = 0.13, p = 0.039), and no history of psychotropic drug use (ρ = −0.13, p = 0.041).
Results of the correlation analysis between resilience and background characteristics
ρ = Spearman’s rank correlation coefficient.
LOC, locus of control.
Relationship between resilience and coping styles among family caregivers
As summarized in Table 3, the higher resilience was associated with more frequent use of some positive coping styles such as active coping (ρ = 0.29, p < 0.001, adjusted p < 0.001), acceptance (ρ = 0.29, p < 0.001, adjusted p < 0.001), positive reframing (ρ = 0.29, p < 0.001, adjusted p < 0.001), planning (ρ = 0.24, p < 0.001, adjusted p < 0.001), and humor (ρ = 0.18, p = 0.003, adjusted p = 0.001). The higher resilience was associated with less frequent use of negative coping styles such as behavioral disengagement (ρ = −0.38, p < 0.001, adjusted p < 0.001), self-blame (ρ = −0.27, p < 0.001, adjusted p < 0.001), and denial (ρ = −0.14, p = 0.029, adjusted p = 0.015).
Results of the correlation analysis between resilience and coping styles
Partial correlation coefficients adjusted for educational level, history of psychotropic drug use, and internal locus of control.
ρ = Spearman’s rank correlation coefficient.
Discussion
In this study, we identified factors associated with resilience in family caregivers of terminally ill patients with cancer and found that those who used positive coping styles such as active coping, acceptance, positive reframing, planning, and humor were more resilient, while those who used negative coping styles such as behavioral disengagement, self-blame, and denial were less resilient.
A higher internal locus of control was associated with greater resilience. People with a high internal locus of control attribute their current situation and the causes of events that occur to their own abilities and efforts, which lead to proactive problem-solving coping with subsequent higher learning ability, stress tolerance, and resilience (Brosschot et al. Reference Brosschot, Gebhardt and Godaert1994; Rotter Reference Rotter1966). We also found that higher educational levels were associated with greater resilience, as previously reported in qualitative studies (Giesbrecht et al. Reference Giesbrecht, Wolse and Crooks2015). Higher educational levels may be related to socioeconomic backgrounds because students with higher socioeconomic status tend to get better educational achievement (Thomson Reference Thomson2018). Further studies are required to determine whether educational levels, socioeconomic backgrounds, or both associate with resilience. In this study, family caregivers with a history of psychotropic drug use had relatively low resilience, which may be due to the fact that those with lower resilience are more likely to develop mental problems (Hu et al. Reference Hu, Zhang and Wang2015).
Among family caregivers of terminally ill patients with cancer, those who frequently used active coping, acceptance, positive reframing, planning, and humor were more resilient, while those who frequently used behavioral disengagement, self-blame, and denial were less resilient. Greer et al. found that early palliative care interventions significantly increased patients’ use of approach-oriented coping styles such as active coping, positive reframing, and acceptance, while slightly reducing their use of avoidant coping styles such as denial and self-blame (Greer et al. Reference Greer, Applebaum and Jacobsen2020). In addition, Northouse et al. and von Heymann-Horan et al. found that specialized palliative care intervention associates with dyadic coping styles (Northouse et al. Reference Northouse, Mood and Schafenacker2013; von Heymann-horan et al. Reference von Heymann-horan, Bidstrup and Johansen2019). Thus, palliative intervention involving coping skill education for patients and family caregivers may increase family caregivers’ use of effective coping styles while decreasing their use of ineffective coping styles. Because the current study found an association between resilience and the coping described above, palliative care interventions may improve coping and thus increase resilience. Rosenberg et al. reported the effects of skill-based educational interventions involving coping skills on resilience and psychological outcomes in children, adolescents, or young adults with serious illnesses (Rosenberg et al. Reference Rosenberg, Bradford and McCauley2018, Reference Rosenberg, Yi-Frazier and Eaton2015). Resilience is thought to be more likely to develop at younger ages when neural plasticity is higher, (Haglund et al. Reference Haglund, Nestadt and Cooper2007; Southwick and Charney Reference Southwick and Charney2018) and it is unclear whether it can be adapted in older subjects. Previous studies have reported that resilience mediated the relationship between positive coping styles and post-traumatic growth (PTG) in family caregivers of patients with schizophrenia (Wu et al. Reference Wu, Liu and Ma2021) and those of patients with hematopoietic stem cell transplantation (Luo et al. Reference Luo, Zhang and Liu2020). Thus, a palliative intervention that educates patients and family caregivers about coping skills may promote their PTG through positive coping and resilience.
Study limitations
The current study has several limitations. First, the participants were recruited from 4 PCUs, which are member facilities of the Japanese Hospice Palliative Care; therefore, the findings may not represent the entire population. Second, because of the risk of harm, potential participants who were unable to complete the survey due to extremely severe mental conditions were excluded, which may influence the results. Third, a limitation of the cross-sectional design must be considered while interpreting the causality of the present results.
Clinical implications
Among family caregivers of terminally ill patients with cancer, internal locus of control, educational level, and history of psychotropic drug use were associated with resilience. Assessing these factors may help to identify family caregivers with lower resilience who are at risk of developing major depression after bereavement.
In addition, coping skill-based educational interventions targeting patients and their family caregivers that focus on specific coping styles associated with resilience may increase family caregivers’ resilience, resulting in less emotional distress and a lower risk of major depression after bereavement. Further research on the mechanisms in this area is needed.
Conclusion
Among family caregivers of terminally ill patients with cancer, we identified factors associated with resilience and found that those who used positive coping styles such as active coping, acceptance, positive reframing, planning, and humor were more resilient, while those who used negative coping styles such as behavioral disengagement, self-blame, and denial were less resilient. To increase resilience, dyadic palliative care interventions focused on coping skill education may be needed.
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.
Acknowledgments
We are grateful to all patients, family caregivers, and institutions that participated in this study. We would like to thank Dr. Yosuke Matsuda (St. Luke’s International Hospital), Prof. Kazuki Sato (Nagoya University Graduate School of Medicine), and Ms. Kazumi Ishigaki (Gratia Hospital) for their assistance in conducting our research. The authors would like to thank Enago (www.enago.jp) for the English language review.
Funding
This study was funded by the Grant for Research Advancement on Palliative Medicine, Japanese Society for Palliative Medicine, and cofunded by JSPS KAKENHI (Grant Number JP17K17460; the Grant-in-Aid for Young Scientists [B]). The funders had no role in the study design, data collection, analysis, decision to publish, or preparation of the manuscript.
Competing interests
The authors declare none.
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