Religious Involvement, Depressive Symptoms, and Burden in Caregivers of Terminally Ill Patients

Introduction

Background

Caring for patients with terminal illness can be emotionally difficult and burdensome. Caregiving has been associated with anxiety and depression,¹ and regardless of sex, age, or ethnicity, caregivers are at risk for major stress, anxiety and depression, and are vulnerable to physical and financial repercussions.² Previous studies highlighted about 70% of family caregivers of patients receiving palliative care suffer from clinically relevant signs of anxiety and depression,³ and 26–57% of caregivers reported depression.⁴ A recent study found denial and self-blame predict high levels of anxiety and depression.⁵ Caregiver burden is associated with caregiver stress and depression⁶ and is particularly common among caregivers of patients with cancer, chronic obstructive pulmonary disease, and heart failure.⁷ Informal caregivers, often spouses, relatives or friends, frequently experience caregiver burden associated with mental, physical, emotional, social, or financial negative outcomes.⁸ Recent research shows that patients with Amyotrophic Lateral Sclerosis (ALS) and their caregivers become socially marginalized as the disease progresses and patients become more dependent on caregivers.⁹ Moreover, caregivers reported feelings of guilt related to caregiverg burden as well as social isolation and loneliness.⁹

Previous study of caregivers ofpatients who had experienced a stroke found the main caregivers experienced high burden and endured an equal to or greater occurrence of mental illness than the patients.⁶ Often, up to 64% of caregivers of persons after stoke experience anxiety and symptoms of depression.⁶ Additionally, long-term caregiving is affected by financial pressures, psychological and physical constraints and other family and work responsibilities.⁶ The National Consensus Project Clinical Practice Guidelines which have been used widely among clinicians to improve access to palliative care for patients with terminal illness and their caregivers emphasize the importance of care that includes religious and spiritual support.¹⁰ However, the religiosity and spirituality of caregivers have been understudied.

Religiosity is the use of individual practices, rituals, values, and beliefs related to faith, which has been used as coping strategies. ¹¹ As of 2019, 45% of people reported religion is a very important or fairly important (26%) part of their life and 51% of them are a member of a church or synagogue and 34% attend church or synagogue regularly.¹² Moreover, 53% of US citizens report religion can address their problems and 58% pray to God outside of a church or synagogue.¹² Recent studies have shown the association between well-being, physical health, happiness, quality of life, and decreased depression and religious involvement.¹³ Similarly, previous studies have shown religiosity while experiencing stress of illness could be associated with positive or negative religious coping among caregivers.¹⁴ More recent study highlighted that some caregivers felt illness was a punishment while using spirituality to cope with their situation. ¹⁵ Caregivers of patients with cancer with higher spiritual well-being3 index scores had higher burden levels compared to those with lower scores.¹⁶

Previous studies described an association between religion and well-being among caregivers of patients with terminal cancer. Specifically, positive religious coping increased the level of satisfaction and positive emotions in caregivers. ¹⁷ Hebert and colleagues examined caregivers of individuals with dementia and found that religious beliefs, practice, and attendance were associated with better mental health in family caregivers.¹⁸ Moreover, another study highlighted that caregivers may use their religiosity and spirituality as a way of coping with stress and coming to terms with their circumstances.¹⁹ Furthermore, caregivers identified spirituality and religiosity as a helpful tool to cope with their loved one’s illness and had a positive impact on their loved one’s physical and emotional symptoms.²⁰ A recent study highlighted that positive religious coping was associated with better health outcomes, adaptation, quality of life, and wellbeing. In contrast, , negative religious coping was associated with anxiety, depressive symptoms, health impairment, loneliness, and lower quality of life.²¹ Caregivers who considered their situation as part of God’s plan or an experience to gain strength, reported positive outcomes. However, caregivers who viewed their situation as unjust, unfair, punishment from God, or as abandonment from God, had worse mental and spiritual outcomes compared to caregivers with positive religious coping.²²

Although the role of religious coping in patients with terminal illness has been studied, the role of religiosity and religious coping in caregivers of patients with terminal illness has been relatively understudied. The purpose of this study was to describe religiosity, religious coping, and depressive symptoms in caregivers of persons with ALS and examine the relationship between caregiver religiosity (denomination, frequency of religious service attendance and importance of religion) and religious coping to depressive symptoms in caregivers of persons with ALS or advanced cancer.

Methods

Study Design and setting

This descriptive exploratory study used data from a larger five-year NIH-funded multi-site randomized controlled trial to test the efficacy of a facilitated patient-family discussion about decision making at the end of life. The Trial of Ascertaining Individual Preferences for Loved Ones’ Role in End-of-life Decisions study (the TAILORED study) tested the impact of a nurse-led intervention to promote patient and caregiver healthcare decision-making at the end of life. Participants were recruited from the ALS clinic, GI oncology clinic, and GI surgical clinic at Johns Hopkins Medical Institutions in Baltimore, Maryland and the GI oncology clinic at the University of Chicago Hospital in Chicago, Illinois.

Procedures

The study was approved by the Johns Hopkins Medicine Institutional Review Board. In order to be eligible to enroll in the study, the patient had to: have a diagnosis of amyotrophic lateral sclerosis (ALS), or advanced GI cancer with a prognosis of 50% mortality in 2 years; identify a friend or family member who was involved in health care decision making to also participate in the study; be 18 years of age; and speak English. Caregiver was defined as someone with whom the patient made his/her healthcare decisions. Participants over 80 years of age who had more than 5 errors on the Pfeiffer short portable mental status questionnaire were excluded for the study.

The data was collected between 2010–2013. Three hundred forty-seven patients were screened, of whom 274 were eligible participate and 108 declined to participate. One hundred sixty-seven (167) patient-caregiver dyads (a total of 332 participants) were consented, enrolled, and randomized into the study. The TAILORED intervention group was surveyed at baseline, received a follow-up phone call at 4 weeks, and was surveyed at 6–8 weeks after the intervention. The control group received standard care.

Measures

Demographic data included patient and caregiver characteristics such as age, sex, race, relationship of caregiver to patient, and the terminal diagnosis of either cancer or ALS.

Religiosity was operationalized using three questions focused on denomination, religious attendance, and importance of religion.

• Denomination: What is your religion? Responses: Protestant, Catholic, Jewish, Muslim, Christian, None, Other.

• Religious Attendance: Before your family member’s illness, how often did you generally attend religious services (“illness” refers to present diagnosis)? Responses included: never, once or twice a year, once a month, once a week, more than once a week, same frequency, not applicable. (i.e., high=weekly or more; low=less than weekly)

• Importance: How important is religion to you? Responses included: not important, somewhat important, very important.

Religious coping was defined as religious methods of coping to find meaning, to gain control, comfort and closeness to God, intimacy with others, and to achieve a life transformation.²² Religious coping was measured using the five-items from the Religious/ Coping Short Form. The five items were further divided to capture three aspects of religious coping:

• General religious coping: Viewing life as spiritual force. The item was dichotomized into “high” (a great deal, quite a bit) and “low” (somewhat, not at all).

• Positive religious coping: Use of religious coping in stress, seeing God as partner, and seeking support from God. The items were dichotomized into “high” (a great deal, quite a bit) and “low” (somewhat, not at all). Subscales ranged from 3 to 12 (higher scores indicate less religious coping).

• Negative religious coping: Feeling abandoned by God. The item was dichotomized into “yes” (a great deal, quite a bit, somewhat) and “no” (not at all).

• Total religious coping: Sum scores of the five items

Depressive symptoms were defined as the current level of depressive symptomatology, with an emphasis on the affective component, depressed mood.²³ Depressive symptoms were measured with the Center for Epidemiologic Studies Depression Scale (CES-D 10).²³ A positive depressive screen was defined as a score of ≥10 in this study.

Caregiver’s religious coping was measured using high (“a great deal” or “quite a bit”) or low (“somewhat” or “not at all”) and yes (“a great deal” or “somewhat) or no (“not at all”). Relationships between religiosity, religious coping, and depressive symptoms were measured using CESD-10 to test the hypothesis that religious coping, such as religious attendance, importance, negative religious coping and positive religious coping were associated with depression.

Statistical Analysis

Statistical analysis was performed using STATA IC 13. Descriptive statistics were used to determine the relationship of patient characteristics, caregiver characteristics, caregiver religiosity (denomination, frequency of religious service attendance and importance of religion), and religious coping to depressive symptoms. Chi square was used to examine the relationships among dichotomized variables. In addition, Pearson correlation was used to examine relationships among continuous data. Bivariate analyses (i.e., t-test, Chi-square, Pearson’s r) was used to explore the relationships among caregiver religiosity, religious coping, and depressive symptoms. The study had a power of 0.8 and alpha of 0.05 (two-tailed).

Results

The study included 156 patient-caregiver dyads. Participant characteristics are described in Table 1. The majority of the caregivers were female (73%), White (72%), and the spouse (56%) of the patient. The patient group included 41% with ALS and 59% with gastrointestinal cancers. Caregiver religiosity and religious coping are summarized in Table 2 and Table 3, respectively. Figure 1 depicts the distribution of CESD-10 scores of caregivers. 46% of participants identified their religion as Christian and the majority of them considered religion as very/somewhat important (87%). While a majority of participants used positive religious coping, 29% of the caregivers used negative religious coping and perceived their situation as an abandonment by God.

Table 1.

Participant Characteristics (n=312)

	Caregiver N=156 (50%)	Patient N=156 (50%)
Mean age in years (SD)	56 (12%)	61 (11%)
Sex
Female	114 (73%)	66 (42%)
Male	42 (27%)	90 (58%)
Race
White	113 (72%)	112 (72%)
Black	34 (22%)	35 (23%)
Asian	7 (5%)	6 (4%)
Multiracial	2 (1%)	2 (1%)
Ethnicity
Hispanic	10 (6%)	10 (7%)
Non-Hispanic	146 (94%)	145 (93%)
Relationship to patient
Spouse	88 (56%)	---
Other	45 (29%)	---
Child	23 (15%)	---
Patient’s Disease
ALS	---	65 (42%)
Cancer	---	91 (58%)

Table 2.

Caregiver Religiosity

Denomination
Christian	71 (46%)
Catholic	43 (28%)
Jewish	5 (3%)
Other	36 (23%)
Religious attendance
Less than once a week	97 (62%)
At least once a week	59 (38%)
Religious importance
Very important/somewhat important	134 (87%)
Not important	20 (13%)

Table 3.

Caregiver Religious Coping

General Religious Coping*N (%)	High	Low
Life as a spiritual force	96 (62%)	60 (38%)
Positive Religious Coping* N (%)	High	Low
Using religion in stress	83 (53%)	73 (47%)
Seeing God as partner	98 (63%)	58 (37%)
Seeking support from God	100 (64%)	56 (36%)
Subscale total (SD)		6.23 (2.83)
Negative Religious Coping**N (%)	Yes	No
Abandoned by God	45 (29%)	111 (71%)
Religious Coping Total Scale mean (SD)	9.87 (3.90)

^*High= “A great deal,” “Quite a bit”; Low= “Somewhat,” or “Not at all”

^**Yes= “A great deal,” or “Somewhat”; No= “Not at all”

Figure 1.

Caregiver CESD-10 Scores

*49% of caregivers were screened positive for depressive symptoms (CES-D10 ≥10).

Relationships between religiosity, religious coping, and depressive symptoms are described in Table 4. About half of the participants had CESD scores higher than 10, suggesting depression. Moreover, negative religious coping was significantly associated with depression (p < 0.01). Although positive religious coping was associated with higher religious attendance (r =1.00), negative religious coping was not associated with religious attendance (t=0.28). Furthermore, religious denomination was associated with negative coping. Caregivers who identified as Catholics or Other were more likely to report negative religious coping than caregivers who identified as Christian or No denomination. Additionally, total religious coping (p=0.62) and positive religious coping (p=0.36) were not associated with depression.

Table 4.

Relationship of Caregiver Religiosity & Religious Coping to Depression

	CESD-10		P-value
Religious attendance		t=0.28	0.98
Less than once a week	9.97±0.43
At least once a week	9.95±0.57
Religious importance		t=−0.85	0.39
Very/somewhat important	10.03±0.37
Not important	9.15±0.98
Negative Religious Coping		t=−3.38	<0.001*
Yes	11.37±0.71
No	9.24±0.37
Positive Religious Coping	r=−0.074	0.36
Total Religious Coping	r=−0.04	0.62

^*P-value<0.05

Religiosity and Religious Coping

Eighty-seven percent of caregivers described religious importance as very important or somewhat important. Thirty-eight percent of caregivers reported attending a religious service at least once a week. Positive religious coping was associated with higher religious attendance (t=7.91, p<0.001). Moreover, religious denomination is associated with negative coping, specifically, caregivers who identified as being of the Catholic denomination reported a higher use of negative coping (X²=23.78, p=0.005).

Depression

Nearly half of the caregivers had significant depressive symptoms indicating a positive depression screen (CESD>10). See Figure 1. In addition, this study found spouse caregivers reported higher depressive symptoms than non-spouse caregivers. Moreover, there was a correlation between religious coping and depressive symptoms with negative religious coping being associated with higher depressive symptoms.

Discussion

The purpose of this study was to describe the relationship between religiosity and religious coping to caregiver depressive symptoms. In this study, positive religious coping was associated with higher religious attendance (t=7.91, p<0.001) and religious denomination was associated with negative coping, specifically, caregivers identifying as of the Catholic denomination reported higher use of negative coping (X²=23.78, p=0.005). This was different from other studies that demonstrated that religious beliefs and attendance were associated with better mental health.¹⁸ As in other studies, religiosity and religious coping are complex constructs, and religiosity alone does not appear to reduce the challenges of caregiving. Rather, the perception of positive religious coping is associated with more positive outcomes, and negative religious coping with depressive symptoms. A previous study found differences in religious coping associated with positive versus negative religious coping.²⁴ Similarly, a study by Pearce and colleagues demonstrated that positive religious coping was associated with a positive emotional experience of caregivers.¹⁷ Therefore, healthcare providers should ask caregivers about their religious beliefs and coping in order to provide support and refer to pastoral care as appropriate.

Although this study highlighted a correlation between religious coping and depressive symptoms with negative religious coping being associated with higher depressive symptoms, it is important to note that this finding does not indicate a causal direction. Depression could cause negative religious coping rather than negative religious coping causing depression. It is essential that caregivers of patients with terminal illness be screened for depressive symptoms given that nearly half of the caregivers in this study had a positive screen for depression. Caregivers can be directed to appropriate support groups, resources, and specialists, such as social workers, pastoral care, and therapists to minimize their stress and depressive symptoms.

Limitations

A few limitations of this study include a relatively small number of participants with 156 dyads at two academic medical centers in Baltimore and Chicago. In addition, there was a lack of diversity, as only two diseases, ALS and GI cancer were included in the study and more than half of the participants were female and white, which limits generalizability to a broader ethnic population. Nonetheless, this study is generalizable as approximately 75% of patients with ALS in the U.S. are White and 75% of all caregivers are women, which is similar to this study population ²⁵.

Implication for nursing practice

There is a need for targeted approaches to screen caregivers of patients with terminal illness for depression and religiosity. Moreover, there is a need for prospective studies to create and validate a risk prediction model which may be useful in clinical settings to guide care and improve patient and caregiver outcomes. Therefore, nursing assessment should include an assessment of patient caregivers to identify challenges, and provide support and assistance throughout the patient’s disease process.

Implication for hospice and palliative care practice

As many caregivers of patients with terminal illness experience depression due to the burden of caregiving, interdisciplinary team care for caregivers may best address this. It is important to ask the caregiver how he/she is feeling and coping with each visit and provide social support and counseling as needed. This additional support will promote the mental health of caregivers and bolster their ability to care for their loved ones at end of life.

Conclusion

This study highlights that the caregivers of patients with terminal illness are predisposed to developing depressive symptoms related to caregiving burden and their religious beliefs. Therefore, health team members should ask caregivers about their religious beliefs and coping, and provide support or consult pastoral care as appropriate to improve the psychological state of caregivers. Caregiving will always be an essential component of health care that is received by many terminally ill patients. This study validates that many caregivers experience depression and that these challenges are mitigated by positive religious coping.