Spiritual Well-Being and Care Burden among Families of Patients with Terminal Cancer: Is Emotional Distress a Crucial Thing?

Abstract

Purpose

This study investigated the association between spiritual well-being and care burden among family caregivers of patients with terminal cancer.

Methods

Data from 172 family caregivers from nine hospice care units in South Korea were analyzed using multivariate regression models. Spiritual well-being was measured using the Functional Assessment of Chronic Illness Therapy – Spiritual Well-being questionnaire, and the subjective care burden on family caregivers was assessed using the Caregiver Reaction Assessment tool.

Results

The current study demonstrated a positive association between spiritual well-being and family caregivers’ care burden, which is consistent with a previous study that evaluated anxiety. On the subscales, disrupted schedules were positively associated with the meaning/peace domain. Further analysis revealed that adjusting for emotional distress changed the direction of the association or mitigated the magnitude of the association.

Conclusion

Among family caregivers of patients with cancer, spiritual well-being reflects their care burden, in which emotional distress may play an important role.

INTRODUCTION

Caring for patients with cancer imposes a substantial burden on families, especially in family-oriented cultures such as South Korea [1]. If patients are at the end of life, their family caregivers (FCs) have more substantial physical and psychosocial burdens due to the increased responsibility and experience of seeing their loved ones die [2]. Many studies have examined factors related to care burdens among the FCs of patients with cancer; however, research on spirituality among the FCs of patients with terminal cancer is lacking.

Spiritual well-being (SWB) is conceptualized as an expression of spirituality and serves as a measure of an individual’s spiritual health [3]. Higher spirituality can make FCs more resilient and optimistic, and thus facilitate their coping with difficult situations [4]. Some studies, which have had inconsistent results, have explored the association between SWB and care burden among FCs of patients with cancer [3,5-7], and no study has been conducted at the very end of life. Given that spiritual need is a culture-bound construct [8] that predominates toward the end of life [9], this study investigated the association between SWB and perceived care burdens among FCs of patients with terminal cancer in South Korea.

METHODS

1. Design and participants

Nine hospice care units in South Korea participated in this cross-sectional study between September 2021 and May 2023. Only patients with terminal cancer who provided informed consent were admitted to these units. The FCs of the admitted patients were screened consecutively to assess their eligibility. FCs were identified by patients as relatives who provided their most informal care. FCs were excluded if they were under 20 years of age, could not complete the questionnaires satisfactorily, or did not agree to participate. The researchers checked the responses immediately after receiving the completed surveys and promptly followed up to minimize missing values. After excluding seven individuals who provided unclear responses on care burdens, 172 FCs were included in the analysis. Detailed information on the survey has been previously described [10]. All FCs provided written informed consent, and the institutional review boards of each medical center approved the study: Korea University Guro Hospital (2021GR0396), National Cancer Center (NCC2021-0231), Gachon University Gil Medical Center (GDIRB2021-283), Veterans Health Service Medical Center (BOHUN2021-07-007-001), International St. Mary’s Hospital (21IRB064), Ilsan Hospital (NHIMC2022-05-003-003), Daegu Dongsan Hospital (DDH21-009D), and Eunpywong St. Mary Hospital/Incheon St. Mary Hospital (CIRB-20210928-001).

2. Measures

The Korean version of the Caregiver Reaction Assessment (CRA-K) tool [11] was used to assess the subjective care burden of FCs (Cronbach’s α: 0.81 in the validation study vs. 0.87 in this study). The CRA-K consists of 24 items rated on a 5-point Likert scale. These items comprised five subscales: four for negative aspects (disrupted schedule, lack of family support, health problems, and financial problems), and one for positive aspects (care-derived self-esteem). Higher scores on the four negative subscales and lower scores on the positive subscale indicated a higher burden.

SWB was measured using the Functional Assessment of Chronic Illness Therapy - Spiritual Well-being (FACIT-Sp-12) questionnaire [12] (Cronbach’s α: 0.86 in the validation study vs. 0.88 in this study), a 12-item self-reported questionnaire comprised of two 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,” and higher scores indicated a higher spiritual quality of life. The Korean version of this questionnaire has not been officially validated, but has been used in domestic studies.

The covariates included in the analysis were demographics (age, sex, relation to patients, educational level, marital status, current job, and practicing a religion), caregiving environments (time for caregiving, social support assessed via the Medical Outcome Study Social Support Survey [13] [Cronbach’s α: 0.97 in the validation study vs. 0.97 in this study], family functionality assessed through the family Adaptation, Partnership, Growth, Affection, and Resolve questionnaire [14] [Cronbach’s α: 0.84 in the validation study vs. 0.83 in this study], and perceived quality of care assessed through the Quality Care Questionnaire-End of Life [15] tool [Cronbach’s α: 0.89 in the validation study vs. 0.87 in this study]), psychological resilience level (assessed using the Connor–Davidson Resilience Scale) [16] (Cronbach’s α: 0.93 in the validation study vs. 0.93 in this study), and emotional distress (assessed using the Hospital Anxiety and Depression Scale) [17] (Cronbach’s α: 0.89 for anxiety and 0.86 for depression in the validation study vs. 0.85 for anxiety and 0.85 for depression in this study).

3. Statistical analyses

Multivariate regression analysis adjusted for potential covariates was used to examine the domain-specific relationship between SWB and the care burden of FCs of patients with terminal cancer. Analyses were conducted using STATA/MP version 17.0 (Stata Corp., College Station, TX, USA), and P-values of <0.01 were considered to indicate statistical significance.

RESULTS

Table 1 presents the characteristics of the FCs. The mean (±standard deviation [SD]) participant age was 53.8 (±13.1) years; 129 (75.0%) were women, 68 (39.5%) were patients’ spouses, 129 (75.9%) were married, 72 (42.1%) were currently employed, and 94 (55.3%) practiced a religion. On average, FCs provided care for 18.6 h per day and 5.6 days per week. The mean scores (±SDs) of the main variables were 17.7 (±6.2) for “peace/meaning,” 7.3 (±5.1) for “faith,” 3.2 (±0.6) for “self-esteem,” 3.6 (±0.8) for “disrupted schedule,” 2.2 (±0.9) for “lack of family support,” 3.0 (±0.9) for “health problems,” and 2.5 (±0.9) for “financial problems.” The score distributions of the other questionnaires are presented in Table 1.

Table 1.

General Characteristics of Participants and Distribution Scores (N=172).

Variables	Mean±SD or n(%)	Range
		Interquartile	Possible
Demographics
Age (yr)	53.8±13.1	44~62
Female sex	129 (75.0)
Spouse	68 (39.5)
Above college graduate level	95 (55.6)
Married	129 (75.9)
Currently employed	72 (42.1)
Practicing a religion	94 (55.3)
Caregiving environment
Careburden
Visiting days per week	5.6±2.0	5~7	1~7
Hours spent per day	18.6±7.6	12~24	1~24
Months spent caregiving	8.2±12.1	1~10
Social support (MOS-SSS, total score)	75.1±17.8	61~89	20~100
Family function (APGAR score)	6.2±2.6	5~8	0~10
Quality of care (QCQ-EOL, total score)	26.9±8.0	21~33	0~48
Psychological resilience (CD-RISC score)	58.8±17.1	47~69	0~100
Emotional distress (HADS score)	18.7±8.2	12~24	0~42
Spirituality-related
Spiritual well-being (FACIT-Sp-12 scores)
Peace/meaning	17.7±6.2	14~22	0~32
Faith	7.3±5.1	3~12	0~16
Subjective care burden (CRA scores)
Self-esteem	3.3±0.6	3.0~3.6	1~5
Disrupted schedule	3.6±0.8	3.0~4.2	1~5
Lack of family support	2.2±0.9	1.6~2.8	1~5
Health problems	3.0±0.9	2.3~3.8	1~5
Financial problems	2.5±0.9	2.0~3.0	1~5

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, HADS: Hospital Anxiety and Depression Scale, FACIT-Sp-12: Functional Assessment of Chronic Illness Therapy-Spiritual well-being-12, CRA: Caregiver Reaction Assessment, SD: standard deviation.

Data are presented as beta coefficients per 1-pt increase in the peace/meaning score using regression analysis.

The study demonstrates that FCs with high scores in the faith domain had a high level of self-esteem, and notably, FCs with high scores in the peace/meaning domain were more burdened by disrupted schedules (Table 2) Additional analysis revealed that adjusting for emotional distress tended to reverse the direction of the association or reduce the magnitude of the relationship (Supplementary Table 1).

Table 2.

Association between Spiritual Well-Being and Subjective Care Burden among Family Caregivers (n=172).

Variables	Self-esteem			Disrupted schedule			Lack of family support			Health problems			Financial problems
	β (SE)	P		β (SE)	P		β (SE)	P		β (SE)	P		β (SE)	P
Peace/meaning	0.01 (0.01)	0.250		0.04 (0.01)	0.001		0.0001 (0.01)	0.991		0.03 (0.01)	0.040		0.03 (0.02)	0.075
Faith	0.03 (0.01)	0.007		0.01 (0.01)	0.402		0.006 (0.02)	0.692		0.04 (0.02)	0.015		0.009 (0.02)	0.659

SE: standard error.

Data are presented as beta coefficients per 1-pt increase in spiritual well-being scores by multivariate regression analysis adjusted for demographics (age, sex, relations to patients, education level, marital status, current employment, and professing a religion), caregiving environment (objective care burden, social support, family functionality, and perceived quality of care), psychological resilience, and emotional distress.

DISCUSSION

Unexpectedly, there have been few studies [5,7] on the association between SWB and care burden based on multivariate models, although care burdens are associated with various factors. In one Turkish study, SWB scores were positively associated with burdensome caregiving [5], consistent with our findings. However, an earlier longitudinal study reported a negative association: lack of family support was related to decreased levels of meaning/peace at the 4-month follow-up [7]. The main difference appears to be whether emotional distress was considered. Specifically, the former considered this as in our study, whereas the latter did not. Further analyses indicated a potential mediating role of emotional distress in the relationship between SWB and care burdens, although this did not reach statistical significance.

Generally, high SWB is associated with low burdensomeness in the FCs of patients with strokes [18] and who are undergoing hemodialysis [19]. However, these studies have not considered emotional distress. Caregivers of patients with cancer experience unique emotional distress that reflects fear of death (or recurrence), prognostic uncertainty, and emotional interactions between patients and families [20,21]. The FCs of patients with cancer may perceive their SWB as high as a defense mechanism against the inevitable burden of caregiving [22]. Cancer care providers should interpret FCs’ SWB cautiously because it reflects their burden. A qualitative study is warranted to explore whether SWB serves as a defense mechanism that conceals caregiving burden and to further elucidate the role of cancer-specific emotional distress in these relationships.

This study had some limitations. First, the cross-sectional design prevented us from establishing causative relationships and did not address longitudinal changes in SWB or perceived burdens. Second, as the study included only South Korean participants, generalizations of our findings to other cultures should be approached with caution. Third, unmeasured covariates, such as caregiving demands, FC attachment patterns, and personality, may have influenced the results.

SUPPLEMENTARY MATERIALS

Supplementary materials can be found via https://doi.org/10.14475/jhpc.2025.28.3.115.