Abstract
Purpose:
This study was undertaken to determine the nature of the relationship between psychological resilience and spiritual well-being (SWB) among family caregivers (FCs) of patients with terminal cancer.
Methods:
This multicenter cross-sectional study included 173 FCs from nine inpatient hospice care units. SWB was assessed using the Functional Assessment of Chronic Illness Therapy—Spiritual well-being questionnaire, and various psychosocial variables, including psychological resilience, were also measured. Factors associated with SWB were identified by multivariate regression analysis adjusted for potential covariates.
Results:
Various factors were found to be associated with the SWB of FCs as determined by total FACIT-Sp-12 scores and the scores of its three domains. FC resilience was significantly associated with SWB as determined by total FACIT-Sp-12 scores and scores of the meaning and peace domains.
Conclusion:
Assessing FC psychological resilience would help palliative care providers improve their SWB.
Introduction
Cancer is a major public health issue and poses various challenges to those affected. As the disease progresses, patients experience continuous declines in performance and often become reliant on others for support. 1 In family-oriented cultures like that in Korea, family caregivers (FCs) are an integral part of the cancer care process. 2 When FCs face the impending loss of a loved one, they experience devastating emotions, such as death anxiety, depression, and feelings of helplessness, which intensify palliative care needs. One approach that addresses these needs involves the provision of spiritual care, but unfortunately, this is often overlooked by health care professionals. 3 Moreover, an understanding of factors associated with spiritual care might provide high-quality end-of-life care.
Psychological resilience acts as a buffer against mental health problems and has been conceptualized as a personality trait, that is, the capacity to maintain normal functioning under a distressing situation. In the context of family caregiving, FCs who recover relatively rapidly from caregiving demands can be considered resilient. 4 To date, resilience in the FCs of patients with advanced cancer has scarcely been addressed,5,6 and no study has been performed on the association between psychological resilience and FC spiritual well-being (SWB). Given that spiritual need is a culture-bound construct. 7 that predominates toward the end of life, 8 this study aimed to identify factors associated with SWB and to explore the association between psychological resilience and SWB in the setting of Korean inpatient hospice care.
Methods
Study design and participants
In this multicenter cross-sectional study, we collected data on 173 FCs at nine Korean hospice care centers from September 2021 to May 2023. At each center, terminal cancer patients were required to identify their primary FC, who was defined as the relative that provided most informal care. Within a week of admission, researchers and trained assistants explained the aim and scope of the survey to the participants and administered self-reported questionnaires after obtaining informed consent. To minimize missing values, the researchers checked the responses immediately after receiving the completed surveys and inquired about any missing data. FCs were excluded if they were under 20 years old, could not complete questionnaires satisfactorily, could not communicate with an interviewer, or did not agree to participate in the study. All patients and FCs provided written informed consent, and the institutional review boards of each medical center approved the study.
Measures
SWB was measured using the Functional Assessment of Chronic Illness Therapy—Spiritual Well-being (FACIT-Sp-12) questionnaire. 9 FACIT-Sp-12 is a 12-item self-report questionnaire comprised of three subscales (i.e., meaning, peace, and faith). Each item was rated using a 5-point Likert scale ranging from “not at all” to “very much.” The total score ranged from 0 to 48, and higher scores indicated a higher spiritual QoL. FCs with a total score of ≥25 pts were allocated to the high SWB group and the remainder to the low SWB group. Psychological resilience was assessed using the Connor-Davidson Resilience Scale comprised of 25 items, which was also rated using a 5-point scale from 0 (not at all confident) to 4 (completely confident). Higher scores indicated greater resilience. 10
FC information, such as age, sex, relationship with the patient, attained educational level, current employment status, marital status, and religiosity, and caregiving environmental factors, such as caregiving time, perceived quality of care (QoC), social support, and family function, were collected. Relations with patients were categorized as spouses, children, siblings, parents, and others. Education level was categorized as “high school or lower” or “college or higher.” Marital status was categorized as “married” or “unmarried”, which included never married, divorced, separated, or widowed. Religious affiliation was categorized as “no religion” or “religious,” which included Protestantism, Catholicism, Buddhism, and others. Perceived QoC by FCs was assessed using the Quality Care Questionnaire-End of Life, 11 which contains 16 items rated using a 4-point Likert scale, from 1 (not at all) to 4 (very much). Only total scores were used, and higher scores indicated being more satisfied with the QoC. To evaluate the structure of the social support system, we used the Medical Outcome Study Social Support Survey, which contains 19 items rated on a 5-point scale, from 1 (not at all) to 5 (all of the time). Higher scores indicate greater social support. 12 Family function was estimated using the Korean version of the family Adaptation, Partnership, Growth, Affection, and Resolve instrument, 13 which comprises five items rated on a 3-point scale ranging from 0 (hardly ever) to 2 (almost always). Total scores ranged from 0 to 10, and higher scores indicated greater satisfaction with family functioning.
Statistical analysis
The chi-square test or an independent t-test was used to compare the characteristics of the high and low SWB groups. Multivariate regression analysis adjusted for covariates was used to identify factors associated with FC SWB in total and the three domains. The analysis was performed using STATA/MP version 17.0 (Stata Corp., College Station, TX, USA), and statistical significance was accepted for p-values <0.05.
Results
Table 1 presents a comparison of characteristics by SWB level. FCs with high SWB were older than those with low SWB (57.7 years vs. 50.0 years), and as was expected, a higher proportion professed a religion. In addition, the members of the high SWB group were more likely to be members of a functional family, be satisfied with QoC, and be resilient.
Characteristics of Participants by Spiritual Well-Being (Facit-sp-12 Scores)
Data are presented as means±standard deviations or numbers (percentages), and p-values were calculated using a t-test or a chi-square test.
FACIT-Sp, functional assessment of chronic illness therapy-spiritual well-being; MOS-SSS, Medical Outcome Study Social Support Survey; APGAR, Adaptation, Partnership, Growth, Affection, and Resolve; QCQ-EOL, Quality Care Questionnaire-End of Life; CD-RISC, Connor-Davidson Resilience Scale.
Table 2 shows the results of the stepwise multivariate regression analyses for SWB. Various factors were identified as determined by total FACIT-Sp-12 scores and the scores of three domains. Regarding resilience, the significant associations were noted as determined by total FACIT-Sp-12 scores and scores of the meaning and peace domains.
Factors Associated with Spiritual Well-Being
ß refers to FACIT-Sp scores obtained from multivariate regression models adjusted for demographics (age, sex, relations to patient, education level, marital status, employment status, and religion), caring situations (objective care burden, perceived quality of care, social support, and family function), and psychological resilience.
The table presents only variables found to be significant (p < 0.05) by multivariate regression.
ß, regression coefficient; CI, confidence interval.
Discussion
This study investigated a little-explored field and identified factors associated with SWB in FCs of terminally ill cancer patients, which has not been previously performed. Notably, the study shows that psychological resilience is significantly associated with SWB. Resilience helps FCs cope better with negative emotions and face situations in an adaptive way, 14 which, in turn, increases their SWB. Based on the results obtained, we recommend that ways of assessing and promoting psychological resilience deserve more attention and careful consideration.
Recognizing factors associated with SWB provides a means of potentially identifying vulnerable FCs with lower SWBs. Few studies have explored factors that impact the SWB of the FCs of patients with advanced cancer. One study reported that FC SWB was associated negatively with bodily pain and positively with psychosocial QoL. 15 Another study showed a significant association between FC SWB and social support, higher education, having children, and patient age. 16 In addition to psychological resilience, the present study identified factors associated with SWB among the FCs of terminal cancer patients. First, age was significantly associated with SWB in total and all three subscales. Higher levels of spirituality have been reported among the older FCs of advanced cancer patients, 17 presumably because they accept the inevitability of dying more than younger FCs. Second, although religiosity has been reported to be an important aspect of spirituality, we found it was significantly associated with the faith subscale only, which concurs with another Korean study. 18 Yoon and his colleagues 18 have shown that SWB was significantly higher in patients with a religious affiliation than those with no religious affiliation, and further, the differences were more apparent in the faith domain than in the meaning and peace domain. South Korea is a multireligious country with evenly distributed religions (i.e., Protestants, Catholics, and Buddhists) and a sizable number of atheists/agnostics, and thus, spirituality is more likely to differ from religiosity in Korea. Furthermore, like religiosity, family function and QoC were found to be associated with the faith subscale. Family members almost invariably share the same religion, 19 and people who profess a religion seem to be more grateful for care. 20 Third, we found that FCs with a higher education level have a greater sense of meaning in life but not of peace or faith; the underlying explanation would be further explored by rigorous qualitative study. Finally, consistent with a previous study, 17 in this study, FCs who provided shorter daily caregiving were more likely to feel a sense of peace.
Several limitations of the present study should be noted. First, we did not consider the spiritual struggle, which is the critical counterpart to joy/meaning in spiritual screening of cancer patients. 21 The spiritual struggle could explain some of the results: younger FC may experience greater spiritual struggle due to family demands (e.g., child rearing). Second, the cross-sectional design prevented us from establishing a causal relationship between psychological resilience and spirituality. Resilience also has several influencing factors, 22 which could confound current findings. In addition, we did not explore changes in SWB levels over time. Third, although patients and their FCs share strong relationships, patient factors, including SWB, 23 were not considered. Finally, as the current study included only Korean participants, thereby precluding a general application to other cultures. 24
Nonetheless, despite these limitations, our results warrant the screening of FCs of terminal cancer patients for psychological resilience when planning treatments to provide the best end-of-life spiritual care. Our preliminary findings would have to be supported by future studies. Almost all previous studies on this issue had cross-sectional design, and there have been very few studies to presume the causality. Thus, longitudinal studies are firstly required to observe and assess time-related fluctuations in psychosocial variables, including SWB. Intervention studies for both directions (e.g., resilience-enhancing interventions 25 or spiritual care programs 26 ) are also needed to determine the causality.
Footnotes
Funding Information
This work was supported by Gachon University Gil Medical Center (No. FRD2021-14), which did not participate in the study design, data collection or analysis, the decision to publish, or the preparation of the article. The authors have no conflicts of interest to declare. J.H.L. and Y.J.L. contributed equally to this work as first authors.