Spiritual Care Assessment and Intervention (SCAI) for Adult Outpatients With Advanced Cancer and Caregivers: A Pilot Trial to Assess Feasibility,Acceptability,and Preliminary Effects

Abstract

Background:

Although religion and spirituality are important to adults with cancer and their family caregivers, few studies have tested spiritual care interventions in the outpatient setting.

Aim:

To determine the feasibility, acceptability, and preliminary effects of chaplain-delivered, semi-structured spiritual care to adult outpatients with advanced cancer and their caregivers.

Design:

In this pre/post pilot intervention study, board-certified chaplains utilized the Spiritual Care Assessment and Intervention (SCAI) framework during 4 individual sessions. Surveys at baseline and at 1, 6, and 12 weeks post-intervention assessed spiritual well-being, quality of life, depression, anxiety, and religious coping.

Setting/Participants:

We enrolled U.S. adult outpatients with or without an eligible family caregiver. Eligible patients were at least 18 years old and at least 2 weeks post-diagnosis of incurable and advanced-stage lung or gastrointestinal (GI) cancer.

Results:

Of 82 eligible patients, 24 enrolled (29.3%); of 22 eligible caregivers, 18 enrolled (81.8%). Four planned chaplain visits were completed by 87.5% of patients and 77.8% of caregivers. All enrolled participants completed baseline surveys, and more than 75% completed follow-up surveys at 2 of 3 time points. More than 80% of patients and caregivers reported they would recommend the sessions to a friend or family member. Patients’ spiritual well-being improved significantly at all timepoints compared to baseline: 1-week post (p < .006), 6-weeks post (p < .001), and 12-weeks post (p < .004).

Conclusions:

Spiritual care through SCAI is feasible, acceptable, and shows promise in improving spiritual well-being and other important outcomes in advanced-stage cancer patients and family caregivers. Further investigation is warranted.

Keywords

chaplain spirituality religion advanced cancer oncology outpatients caregivers quality of life

Introduction

Religion and spirituality are central to many patients and caregivers.^1-4 Among adults with cancer, religion and spirituality are an important resource for coping with illness.^5-11 While prior descriptive studies have addressed the religious and spiritual needs of inpatients,^12,13 interventions addressing religious and spiritual needs of outpatients remain an area of opportunity for further study.^14-16 Specifically, religious and spiritual needs of adult outpatients with advanced cancer have received little attention.^17-19 This lack of knowledge is an obstacle to delivering holistic, patient-centered palliative care that provides relief from the symptoms and stress of advanced cancer.

The chaplain-delivered, semi-structured Spiritual Care Assessment and Intervention (SCAI) framework is an evidence-based intervention previously shown to be feasible and acceptable with family surrogates for critically ill adults in the ICU.²⁰ The objective of this study was to test the SCAI framework in adults with advanced cancer and their caregivers in outpatient settings. We conducted a single-arm pilot study with a pretest/posttest design at a National Cancer Institute-designated comprehensive cancer center located in the midwestern United States. Our primary aim was to assess intervention feasibility and acceptability for patients and their family caregivers, if available. Our secondary aim was to determine preliminary effects regarding psychospiritual and quality of life outcomes. Feasibility benchmarks included enrollment rates and attendance rates for study visits; acceptability benchmarks included survey completion rates and mean satisfaction scores.

Materials and Methods

Enrollment of participants occurred between January 2019 and March 2019. The study was approved on December 21, 2018, by the Scientific Review Committee of the National Cancer Institute–designated Indiana University Simon Comprehensive Cancer Center (IUSCC-0665) and Indiana University Institutional Review Board (IRB #1809545753). The study is registered on ClinicalTrials.gov with identifier NCT03823313. All participants completed written informed consent prior to enrollment.

Setting and Participants

Eligible participants were recruited from a single university-affiliated cancer center. Eligible patients were at least 18 years old and at least 2 weeks post-diagnosis of an incurable and advanced stage IV lung or gastrointestinal (GI) cancer, had a reliable phone for study contact, had adequate English fluency for completion of data collection, and did not exhibit significant psychiatric or cognitive impairment. Patients were eligible to participate with or without a family caregiver. Eligible caregivers were family members or close friends identified by patients. Caregivers were eligible to participate if they were at least 18 years of age, had been invited by an eligible patient, had a reliable phone for study contact, had adequate English fluency for completion of data collection, and were able to begin the intervention within 6 weeks of enrollment.

Patients were identified through electronic medical record review in advance of a scheduled appointment at the oncology clinic. Using a brief screening, the patient’s oncologist was asked to judge if the patient had a prognosis of 1 year or less. If there was uncertainty, the physician was asked, “Would you be surprised if this person died within 12 months?” which has been validated in prior research as a proxy for prognosis.²¹ Eligible patients and caregivers were approached for informed consent. Most patients were approached in clinic, and most caregivers were approached by phone.

Data Collection and Instruments

A trained research assistant conducted baseline assessments in person at the patient’s clinic appointment or by phone within 21 days of enrollment. The baseline assessment included social and demographic characteristics. Eligible caregivers were enrolled within 30 days of patient enrollment. Participants were invited to complete assessments at baseline (T0; week 0), at the end of the SCAI intervention (T1—1-2 weeks post-intervention), at 2 follow-up timepoints (T2—6-8 weeks post-intervention; T3—12-14 weeks post-intervention). Participants received a $25 gift card for each completed assessment.

Participant assessments included a combination of measures of religious involvement, spiritual well-being, quality of life, religious coping, depression, and anxiety from previously validated surveys. Religious involvement was characterized at baseline using the 5-item Duke University Religion Index (DUREL; Table 1).²² This measure was not included in other timepoints because it is believed to be static. Measures of spiritual well-being, quality of life, religious coping, depression, and anxiety were assessed across all time points as change from baseline. Spiritual well-being was assessed using the 12-item Functional Assessment of Chronic Illness Therapy-Spiritual Well-being Scale (FACIT-Sp-12; Supplemental Table 1).²³ The FACIT-Sp for non-illness participants was used with caregivers.²³ Quality of life was assessed using the McGill Quality of Life-Revised (MQoL-R) for patients and the Caregiver Quality of Life Index-Cancer (CQOLC) for caregivers (Supplemental Table 1).^24,25 Mental health symptoms for patients and caregivers, including anxiety and depression, were assessed using the Generalized Anxiety Disorder scale (GAD-7) and the Patient Health Questionnaire (PHQ-8) (Supplemental Table 2).^26,27 Religious coping was assessed using the Brief RCOPE (Supplemental Table 3) for both populations.²⁸

Table 1.

Descriptive Characteristics of Participants, Including Patients and Family Caregivers.

Descriptive characteristics
	Patients; n = 24	Family caregivers; n = 18
Age, years	60.5 (39-92)	54 (37-68)
Male	7 (29.2)	8 (44.4)
White	17 (70.8)	13 (72.2)
Hispanic	1 (4.2)	0 (0)
Income
Comfortable	16 (66.7)	14 (77.8)
Just enough	3 (12.5)	4 (22.2)
Not enough	4 (16.7)	0 (0)
Refused	1 (4.2)	0 (0)
Marital status
Married	16 (66.7)	12 (66.7)
Single	2 (8.3)	1 (5.6)
Divorced	4 (16.7)	1 (5.6)
Widowed	1 (4.2)	0 (0)
With opposite sex unmarried	1 (4.2)	3 (16.7)
Separated	0 (0)	1 (5.6)
Education
High school or less	3 (12.5)	2 (11.1)
Some college or college degree	21 (87.5)	16 (88.9)
Religion/faith
None	1 (4.2)	1 (5.6)
Protestant	16 (66.7)	13 (72.2)
Catholic	7 (29.2)	4 (22.2)
Other	0 (0)	0 (0)
Caregiver relationship to patient
Spouse/partner		10 (55.6)
Parent		0 (0)
Sibling		0 (0)
Adult child		5 (27.8)
Neighbor/friend		1 (5.6)
Other		2 (11.1)
Organized religious activity (ORA)
Attend services; weekly or more	12 (50.0)	13 (72.2)
DUREL ORA score (single item)	3.5 (0, 5)	4 (0, 5)
Non-organized religious activity (NORA)
Private religious activities; weekly or more	22 (91.7)	18 (100)
DUREL NORA score (single item)	4 (0, 5)	4 (2, 5)
Intrinsic religiosity ^a (IR)
In my life, I experience the presence of the Divine (i.e. God)	22 (91.7)	17 (94.4)
My religious beliefs are what really lie behind my whole approach to life	23 (95.8)	18 (100)
I try hard to carry my religion over into all other dealings in life	23 (95.8)	16 (88.9)
DUREL IR Score (sum of 3 above items)	12 (2, 12)	11 (7, 12)

^a Coded as yes if response was tends to be true or definitely true and no if it was unsure or less.

Values are medians (ranges) for continuous variables and frequencies (percentages) for categorical variables.

Interventions

Participation in the study included 4 chaplain visits with patients and caregivers intentionally assigned to different chaplains. The number of visits corresponded to the number of religious and spiritual dimensions addressed by the intervention framework—the SCAI—delivered by a chaplain who addressed an individual dimension at each visit. Visits were conducted in-person or by phone and were designed to last about 30 minutes. These sessions were scheduled in advance so as not to interfere with the patient’s clinical appointments.

SCAI is a semi-structured spiritual care assessment and intervention framework previously developed and tested with surrogates of intensive care unit (ICU) patients lacking decision-making capacity.²⁰ The SCAI framework includes proactive contact; a spiritual assessment addressing 4 dimensions of religious and spiritual experience; scripted questions designed to assess needs within each dimension; interventions tailored to the individual participant; and systematic documentation in the medical record. The 4 dimensions addressed by the framework are Meaning and Purpose, Relationships, Transcendence and Peace, and Self-Worth and Identity (Table 2). The intervention portion of the SCAI framework includes 26 interventions available to the chaplain. For example, the chaplain may acknowledge grief for a patient at the end of life or may offer to pray consistent with that patient’s tradition and informed by the SCAI spiritual assessment (Table 3). The chaplain determined the order to address each dimension based on assessment of each patient’s and caregiver’s needs. The semi-structured design of the framework allowed the chaplain the flexibility to devote time to the dimensions of greatest concern.

Table 2.

SCAI Cancer Use of Questions for Any Visit.^a

	Patients; n = 24		Family caregivers; n = 18
Question	Frequency	%	Frequency	%
I. Meaning and purpose
Tell me what this hospitalization (or illness) has been like for you.	22	24.4	15	25.4
None	17	18.9	14	23.7
What are your sources of strength?	11	12.2	12	20.3
What gives your life meaning?	10	11.1	8	13.4
How do you make sense of what is going on now?	9	10.0	9	15.3
When life is hard, what do you depend on to keep you going?	9	10.0	7	11.9
What is the most powerful or important thing in your life?	8	8.9	6	10.2
Are you facing any decisions right now?	6	6.7	7	11.9
What is your purpose in life (right now)?	5	5.6	0	0
What happens when you feel helpless?	4	4.4	8	13.6
What role do your values and beliefs play in the decisions you are facing in the hospital?	2	2.2	1	1.7
II. Relationship
None	26	28.9	11	18.6
Do you have support outside of your family?	14	15.6	5	8.5
Who is your “go to” person?	12	13.3	9	15.3
Do you have any support from a faith community?	11	12.2	5	8.5
Who is there for you at a time like this one? How are they important?	9	10.0	6	10.2
Are you experiencing any changes in how you are connected to others?	8	8.9	6	10.2
Are you troubled by conflict with anyone?	7	7.8	5	8.5
Do you ever feel lonely?	7	7.8	8	13.6
Do you have family nearby?	6	6.7	4	6.8
How are you connected to others during this health crisis?	2	2.2	7	11.9
Tell me about your relationship with God, higher power, or the sacred.	1	1.1	3	5.1
III. Transcendence and peace
Can I pray for you? How shall I pray for you?	21	23.3	15	25.4
What is the hardest thing about this situation?	17	18.9	8	13.6
None	15	16.7	12	20.3
What helps you when you need to calm down?	11	12.2	4	6.8
How do you experience peace?	9	10.0	8	13.6
Are you at peace?	8	8.9	7	11.9
Can you describe a time when you experienced peace?	8	8.9	5	8.5
What makes you feel peaceful or centered?	8	8.9	5	8.5
Tell me how you find balance in this situation.	8	8.9	5	8.5
Do you believe in a higher power, God, or the sacred?	7	7.8	6	10.2
What do you have faith in?	5	5.6	6	10.2
IV. Self-worth and identity
How are you taking care of yourself right now?	17	18.9	15	25.4
How do you feel about yourself right now?	15	16.7	11	18.6
How has the experience of this illness changed the way you feel about yourself (Your sense of identity)?	15	16.7	4	6.8
Everyone is known for something. What are you known for?	15	16.7	6	10.2
What is weighing on you right now?	14	15.6	17	28.8
None	12	13.3	10	17.0
Do you feel valued?	9	10.0	8	13.6
Are there times you feel like you have to choose someone else over yourself?	5	5.6	3	5.1
How are you handling this illness?	4	4.4	5	8.5

^a Data are presented by visit; therefore, many participants have more than one (n = 23 and 14). Data are presented as frequencies and percentages. Questions are listed in decreasing order of frequency for patients. Frequencies may not add to total visits due to missing data.

Table 3.

SCAI Cancer Use of Interventions.^a

	Patients; n = 24		Family caregivers; n = 18
Interventions	Frequency	%	Frequency	%
Active listening	80	88.9	55	93.2
Acknowledge emotions	54	60.0	44	74.6
Naming behaviors that are beneficial or healthy	52	57.8	40	67.8
Faith affirmation	39	43.3	34	57.6
Non-anxious attending	34	37.8	42	71.2
Normalization	34	37.8	37	62.7
Prayer	28	31.1	30	50.9
Explores behaviors that may be self-defeating or harmful	15	16.7	18	30.5
Acknowledge grief	8	8.9	9	15.3
Life review	6	6.7	18	30.5
Spiritual counseling	6	6.7	31	52.5
Supportive touch	6	6.7	4	6.7
Other	6	6.7	1	1.7
Reading the bible or other sacred text	5	5.6	8	13.6
Investigation of values	5	5.6	6	10.2
Facilitate communication with family/friends	4	4.4	6	10.2
Advance care planning	1	1.1	1	1.7
Referral to member(s) of interdisciplinary team	1	1.1	1	1.7
Referral to other clergy/spiritual support	1	1.1	0	0
Support medical decision making	1	1.1	1	1.7
Ritual or sacrament	0	0	0	0
Confession/amends	0	0	2	3.4
Crisis/trauma care	0	0	0	0
Provision of religious/spiritual resources	0	0	3	5.1
Facilitate communication with other clinicians	0	0	0	0
Communicate with other clinicians about the patient or family	0	0	0	0
None	0	0	0	0
Bereavement support (After patient death)			1	1.7

^a Data are at the visit level; many participants have more than one visit, and so the sample size is larger than the participant sample size. Interventions are listed in decreasing order of frequency for patients. Data are presented as frequencies and percentages. Frequencies may not add to total visits due to missing data.

The SCAI framework was developed with chaplaincy input and rigorous review of current research on religion and spirituality, incorporating literature from international sources representing a variety of religious and cultural expressions.²⁰ The framework is intended to be delivered to participants by board certified chaplains. The 5 SCAI interventionists were graduate-level degree, nationally board-certified chaplains. In preparation for the study, chaplains participated in SCAI framework training by the study team, including a video training and discussion with investigators about the implementation of SCAI. Throughout the recruitment phase, chaplains met weekly to discuss and debrief their interventions. During this time, chaplains shared their experiences of implementing the framework and discussed challenges and benefits.

Qualitative Comments

Research staff utilized a standardized form to inquire about intervention satisfaction during phone interviews with participants at 12-weeks post-intervention. In addition to survey measures about outcomes of interest and quantitative satisfaction measures, research staff solicited qualitative comments from participants about what they liked most and least, things they learned, and anything they were doing differently post-intervention to cope. Responses were entered in Research Electronic Data Capture (REDCap). Comments were solicited to better understand nuances of the feasibility and acceptability with a new population (patients with advanced cancer) in a new setting (outpatient), as well as to tailor interventions for future studies. Two authors independently reviewed all participant comments and identified those that best illuminated aims of the study.

Data Analysis

Descriptive statistics for demographic and visit information were calculated for both patients and caregivers. Feasibility benchmarks included (1) enrollment rate greater than 40% of eligible patients and caregivers, and (2) attendance rate for study visits greater than 55%. Acceptability benchmarks included (1) baseline survey completion rate greater than 90%, (2) follow-up survey completion rate of greater than 75% and (3) mean satisfaction scores greater than or equal to 2.5 on a 1-4 scale. Preliminary hypothesis tests were performed to determine preliminary intervention efficacy for psychospiritual and quality of life outcomes. Analyses were performed to determine if responses changed significantly over time, from baseline to each of the 3 follow-up time points (1 week, 6 weeks, and 12 weeks post-intervention). Due to data skewness and non-linearity, non-parametric signed-rank tests were performed to determine if change over time was significantly different from zero (P < .05). All analytic assumptions were verified. Analyses were performed using SAS v9.4 (SAS Institute, Cary, NC). The data are housed at Indiana University in a Research Electronic Data Capture (REDCap) database. For inquiries about accessing a de-identified version of the database, contact the corresponding author.

Results

Patient and Caregiver Characteristics

Patients had a median age of 60.5 (range 39-92), and 25% were African American or Black; caregivers had a median age of 54 (range 37-68), and 27.8% were African American or Black (Table 1). Most participants were Protestant (patients 66.7%; caregivers 72.2%) or Catholic (patients 29.2%; caregivers 22.2%), with one participant in each group reporting no religious affiliation. We found that 50% of patients and 72.2% of caregivers reported attending religious services weekly or more; additionally, 95.8% of patients and 100% of caregivers strongly affirmed the item, “My religious beliefs are what really lie behind my whole approach to life” (DUREL; Table 1).

Feasibility

Over 11 weeks, 409 patients were screened for inclusion in the study and 82 were eligible (Figure 1). Of those eligible, 38 patients were approached and declined participation, with the most common reasons for refusal including “not interested,” “already has religious support,” or “doesn’t feel it would benefit me.” An additional 20 patients were approached and interested, but undecided. In total, 24 patients were enrolled (29.3%), and 18 identified eligible caregivers were enrolled. Most caregivers were spouses or partners (55.6%) with the next largest group being adult children (27.8%) (Table 1).

Figure 1.

Study flow diagram.

All patients and a majority (16 of 18) of caregivers completed at least one spiritual care visit, and 21 of 24 patients and 14 of 18 caregivers completed all 4 planned visits (Table 4). Attendance rates for patients and caregivers were 87.5% and 83.3% respectively (Table 4). Visits occurred most frequently by phone (92.4% patients; 96.4% caregivers). Visits averaged 30.09 minutes for patients and 30.88 minutes for caregivers. Average visit duration remained relatively consistent across the 4 intervention visits (+/- 3 minutes). Of 26 possible interventions within the SCAI framework, 20 (76.9%) were used with patients, and 21 (80.8%) were used with caregivers (Table 3).

Table 4.

SCAI Cancer Chaplain Visits.^a

	Patients; n = 24		Family caregivers; n = 18
Maximum number of visits completed	Frequency	%	Frequency	%
4 (All interventions)	21	87.5	14	82.4
3	1	4.2	0	0
2	1	4.2	0	0
1	1	4.2	3	17.7
Location of visits (any visit)
Waiting room	1	1.2	0	0
Other hospital location	3	3.5	2	3.6
Phone	82	92.4	53	96.4
Total number of visits	86		55
Dimensions addressed (any visit)
Meaning and Purpose	48	53.3	37	63.8
Relationships	54	60.0	30	51.7
Transcendence	47	52.2	36	62.1
Self-worth	45	50.0	33	56.9
Visit duration (Minutes—avg of all visits); range	30.09 (14.65); 5-75		30.88 (12.15); 8-60
Visit 1	31.58 (12.92); 11-60		32.06 (11.74); 8-60
Visit 2	28.70 (12.39); 10-60		30.21 (11.22); 10-50
Visit 3	31.77 (18.32); 5-75		32.93 (14.75); 10-55
Visit 4	28.14 (15.17); 10-60		28.14 (11.38); 10-50

^a Data are presented as frequencies and percentages for categorical variables and as means (standard deviation); ranges for continuous variables. Frequencies may not add to total visits due to missing data.

Acceptability

All enrolled participants completed baseline surveys (Supplemental Table 1). Follow-up survey completion rates were high overall with more than 75% of patients completing surveys at 2 of 3 time points (1-week 83.3%; 6-weeks 58.3%; 12-weeks 75%) and more than 75% of caregivers completing surveys at 2 of 3 time points (1-week 83.3%; 6-weeks 83.3%; 12-weeks 72.2%; Supplemental Table 1).

Patients and caregivers rated the project very highly; on a 1-4 scale, pro-rated mean satisfaction scores for patients and caregivers were 3.7. The pro-rated 4-point scale value was calculated by multiplying the current scores by 0.5714 (Tables 5 and 6). Approximately two-thirds of patients identified the sessions as moderately helpful or extremely helpful in “Learning how to live more positively through illness experiences,” “Improved experiences of peace as a result of receiving care from the chaplain,” and “Improved experiences of purpose as a result of receiving care from the chaplain” (Table 5). Of caregivers, approximately 80% reported the sessions were at least somewhat helpful in “Becoming more aware of coping with this illness,” and “Improved experiences of purpose as a result of receiving care from the chaplain” (Table 6).

Table 5.

SCAI Cancer Patient Satisfaction (frequency [%]).

Overall satisfaction	Completely dissatisfied			Mostly dissatisfied					Somewhat dissatisfied					Neither satisfied nor dissatisfied				Somewhat satisfied					Mostly satisfied					Completely satisfied
Overall, how satisfied are you with your experience as a participant in the sessions with the chaplain?	0			0					0					0				1 (5.9)					7 (41.2)					9 (52.9)
Overall helpfulness rating^a	0	1			2			3			4				5		6				7			8			9			10
Overall, how helpful have the chaplain sessions been for you?	0	0			0			0			1(5.9)				2(11.8)		1(5.9)				1(5.9)			2(11.8)			3(17.7)			7(41.2)
Helpfulness in 8 areas of life	Not at all					Very little							Somewhat						Moderately							Extremely
Becoming more aware of coping with this illness?	1 (5.9)					1 (5.9)							3 (17.7)						5 (29.4)							7 (41.2)
Knowing other sources of support through my illness experiences?	1 (5.9)					1 (5.9)							4 (23.5)						5 (29.4)							6 (35.3)
Learning how to live more positively through illness experiences?	0					1 (5.9)							3 (17.7)						4 (23.5)							9 (52.9)
Finding ways to strongly connect with my family?	1 (5.9)					3 (17.7)							4 (23.5)						1 (5.9)							8 (47.1)
Improved experiences of peace as a result of receiving care from the chaplain?	0					2 (11.8)							2 (11.8)						3 (17.7)							10 (58.8)
Improved experiences of purpose as a result of receiving care from the chaplain?	0					1 (5.9)							4 (23.5)						4 (23.5)							8 (47.1)
Improved experiences of relationships as a result of receiving care from the chaplain?	1 (5.9)					2 (11.8)							5 (29.4)						4 (23.5)							5 (29.4)
Improved experiences of belonging as a result of receiving care from the chaplain?	2 (11.8)					2 (11.8)							4 (23.5)						1 (5.9)							8 (47.1)
Extent of contact	Too few/too short									About right												Too many/too long
What do you think about the number of sessions you have with the chaplain?	4 (23.5)									12 (70.6)												1 (5.9)
What do you think about the length of time for the chaplain sessions?	1 (5.9)									15 (88.2)												1 (5.9)
Endorsement/expected use	Extremely unlikely					Unlikely							Neutral						Likely							Extremely likely
If a friend or family member were in a similar situation as you, how likely would you be to recommend the chaplain sessions to them?	0					0							3 (17.7)						2 (11.8)							12 (70.6)
How likely are you to continue to use what you learned in the chaplain sessions?	0					0							1 (5.9)						5 (29.4)							11 (64.7)
Practice days per week/chaplain skills ratings^b	0		1				2					3				4				5					6				7
During the chaplain sessions, you might have experienced several practices. Please tell me how many days per week, on average, you have participated in any of these practices since the beginning of the chaplain sessions.^b	1 (5.9)		2 (11.8)				1 (5.9)					0				0				0					0				12 (70.6)
If you were to rate the chaplain’s skills, 0 being the lowest and 7 being the highest, what would you rate the chaplain? ^c	0		0				0					0				0				2 (11.8)					2 (11.8)				13 (76.5)

^a Ratings range from 0 = Not at all helpful to 10 = Completely helpful.

^b Practices include prayer, touch, listening, music, scripture reading, acknowledged emotions, spiritual counseling, etc.

^c Skills ratings range from 0 = lowest to 7 = highest.

Data are presented as frequencies and percentages. Frequencies may not add to total visits due to missing data. Current overall satisfaction scores were pro-rated to a 4-point scale by multiplying current scores by 0.5714. The acceptability benchmark utilized a 4-point scale, whereas the current scale is 7-point, making a pro-rated calculation necessary for reporting benchmark and findings using the same scalar. The scalar was calculated by taking 4 (original scale) divided by 7 (current scale), arriving at 0.5714, which was then used to multiply the current scores to get the pro-rated mean value reported in the manuscript.

Table 6.

SCAI Cancer Family Caregiver Satisfaction (Frequency [%]).

Overall satisfaction	Completely dissatisfied			Mostly dissatisfied					Somewhat dissatisfied					Neither satisfied nor dissatisfied				Somewhat satisfied					Mostly satisfied					Completely satisfied
Overall, how satisfied are you with your experience as a participant in the sessions with the chaplain?	0			0					0					1 (6.7)				1 (6.7)					3 (20.0)					10 (66.7)
Overall helpfulness rating^a	0	1			2			3			4				5		6				7			8			9			10
Overall, how helpful have the chaplain sessions been for you?	0	0			0			0			0				1(6.7)		1(6.7)				2(13.3)			2(13.3)			3(20.0)			6(40.0)
Helpfulness in 8 areas of life	Not at all					Very little							Somewhat						Moderately							Extremely
Becoming more aware of coping with this illness?	2 (13.3)					1 (6.7)							6 (40.0)						5 (33.3)							1 (6.7)
Knowing other sources of support through my illness experiences?	3 (20.0)					7 (46.7)							3 (20.0)						1 (6.7)							1 (6.7)
Learning how to live more positively through illness experiences?	1 (6.7)					3 (20.0)							4 (26.7)						5 (33.3)							2 (13.3)
Finding ways to strongly connect with my family?	3 (20.0)					4 (26.7)							3 (20.0)						4 (26.7)							1 (6.7)
Improved experiences of peace as a result of receiving care from the chaplain?	0					3 (20.0)							4 (26.7)						4 (26.7)							4 (26.7)
Improved experiences of purpose as a result of receiving care from the chaplain?	1 (6.7)					1 (6.7)							7 (46.7)						5 (33.3)							1 (6.7)
Improved experiences of relationships as a result of receiving care from the chaplain?	0					6 (40.0)							2 (13.3)						6 (40.0)							1 (6.7)
Improved experiences of belonging as a result of receiving care from the chaplain?	5 (33.3)					3 (20.0)							3 (20.0)						4 (26.7)							0
Extent of contact	Too few/too short									About right												Too many/too long
What do you think about the number of sessions you have with the chaplain?	4 (26.7)									11 (73.3)												0
What do you think about the length of time for the chaplain sessions?	0									14 (93.3)												1 (6.7)
Endorsement/expected use	Extremely unlikely					Unlikely							Neutral						Likely							Extremely likely
If a friend or family member were in a similar situation as you, how likely would you be to recommend the chaplain sessions to them?	0					0							1 (6.7)						4 (26.7)							10 (66.7)
How likely are you to continue to use what you learned in the chaplain sessions?	0					0							3 (20.0)						7 (46.7)							5 (33.3)
Practice days per week/chaplain skills ratings^b	0		1				2					3				4				5					6				7
During the chaplain sessions, you might have experienced several practices. Please tell me how many days per week, on average, you have participated in any of these practices since the beginning of the chaplain sessions.^b	0		0				1 (6.7)					2 (13.3)				1 (6.7)				0					0				11 (73.3)
If you were to rate the chaplain’s skills, 0 being the lowest and 7 being the highest, what would you rate the chaplain?^c	0		0				0					0				0				0					4 (26.7)				11 (73.3)

^a Ratings range from 0 = Not at all helpful to 10 = Completely helpful.

^b Practices include prayer, touch, listening, music, scripture reading, acknowledged emotions, spiritual counseling, etc.

^c Skills ratings range from 0 = lowest to 7 = highest.

In review of qualitative comments, participants valued study interventions, such as acknowledging emotions, active listening, and specific rituals such as having the chaplain read a sacred text or pray with them. One such aspect was having a caring person to talk with and someone who listened to them. A patient stated, “…I usually try not to talk about my cancer because I don’t want to burden others or to be in the spotlight…it was really nice to talk to [the chaplain].” Another patient responded, “[the chaplain] made me feel comfortable sharing things I hadn’t talked about before…she’s a great listener, which was conducive to getting me to think more deeply about my illness.” Some people valued the more explicitly religious role of a chaplain such as providing prayer or Scripture reading: “…when [the chaplain] prayed for me, I felt like I mattered.” Comments from caregivers largely mirrored the comments from patients.

Patients and caregivers infrequently voiced preferences or concerns that varied from the designated structure of the intervention. Three such concerns were scheduling, desire for face-to-face interaction, and preference for additional time or sessions. One participant shared: “scheduling was sometimes hard.” Some participants acknowledged phone visits were more convenient than meeting in-person: “[it would have] been better to meet face to face, but I didn’t really want to go out in the cold weather…” Some participants wanted additional or longer sessions: “time went too fast, wanted more interaction,” and “I wish there had been more sessions.”

Preliminary Effects

Patients’ spiritual well-being demonstrated statistically significant improvement at all time points when compared to baseline: 1-week post-SCAI (P = .006); 6 weeks post-SCAI (P < .001); and 12-weeks post-SCAI (P = .004; Figure 2 and Supplemental Table 1). Patients’ and caregivers’ quality of life demonstrated statistically significant improvement at 2 time points when compared to baseline: patients at 1-week (P = .033) and 6 weeks (P = .011), and caregivers’ at 6 weeks (P = .034) and 12-weeks (P = .033). Other measures showed improvements at 1 time point, though not consistently (Figure 2; Supplemental Tables 2 and 3).

Figure 2.

Changes in spiritual well-being, religious coping, anxiety, depression, and quality of life among patients and caregivers from baseline.

Discussion

Findings of this study of outpatient adults with advanced cancer support the feasibility and acceptability of utilizing the SCAI Framework with patients as well as preliminary evidence for use with caregivers. Whereas the previous study utilized the SCAI Framework with ICU surrogate decision-makers, this is the first study extending the SCAI Framework to patients.²⁰ Feasibility of completing outpatient study visits was high, with 21 of 24 (87.5%) patients completing all 4 study visits. For caregivers, this was slightly lower (82.4%). This far exceeds the hypothesized attendance rate of 55%. Though the study enrollment rate was lower than expected, enrollment was similar to prior studies.²⁹

Chaplains demonstrated sustained participant engagement across 4 sessions using the 4 dimensions in the SCAI Framework. All enrolled patients and caregivers completed the baseline survey with strong follow-up survey completion rates at most time points. Moreover, high patient satisfaction scores support the acceptability of the SCAI Framework, with 94.1% endorsing being mostly or completely satisfied with their overall experience with the study chaplain (Table 5). Significant changes in patients’ spiritual well-being, as well as significant changes in patients’ and caregivers’ quality of life demonstrate the impact of the framework with outpatient adults with advanced cancer (Supplemental Table 1). Small improvements also were seen in anxiety, depression, and religious coping at single time points (Supplemental Tables 2 and 3). These results suggest strong feasibility and acceptability with additional possibilities for improving enrollment in a larger study.

Importantly, most visits occurred by phone. This is in contrast to the delivery location of many spiritual care visits in the inpatient setting.^30,31 However, spiritual care by phone is becoming increasingly acceptable in chaplaincy practice—especially given recent experiences with the COVID-19 pandemic.^17,20,32,33 Spiritual care delivered by phone has notable benefits similar to virtual visits for clinical care: the care recipient is able to engage with a chaplain in a meaningful way without having to travel long distances, arrange childcare, or take extended time off from work, thus removing some barriers associated with healthcare access. Secondary benefits to tele-chaplaincy include the conservation of time and resources on the part of both participants and chaplains. These include clinical resources, particularly space, which tends to be at a premium in many ambulatory settings. A phone visit is unobtrusive to the workflow of the clinic. Another benefit of tele-chaplaincy is the recipient is in a familiar space and may feel more at ease sharing her or his concerns with the chaplain; this may be particularly meaningful for racially and ethnically diverse populations who may have negative past experiences in healthcare settings.

A limitation of this study is loss to follow up, which may have minimized detection of changes in outcomes over time. More robust data at multiple time points would provide additional information about the extent to which benefits of the chaplaincy intervention are enduring. A lower number of caregivers enrolled; this may be attributed to the requirement for a patient to enroll in order for a caregiver to be eligible to participate. Future studies could offer spiritual care to caregivers regardless of patient interest. Additionally, caregivers had lower distress scores at baseline on some measures, providing fewer opportunities for significant improvement in post-intervention scores (floor effect).

Participants were highly religious and primarily Christian. While representative of middle- and older-aged adults in the midwest,³⁴ generalizability to other U.S. regions with lower overall religiosity and greater religious diversity may be limited. Future studies should include different regions to capture greater variability in the degree of religiosity as well as recruit for a more religiously diverse sample.

A remarkable feature of this study is high retention of very ill advanced cancer patients over multiple visits. Participant comments suggested positive benefit from the intervention. Some participants stated they would have benefited from support earlier in their cancer diagnosis. Future studies could explore delivering SCAI earlier in the disease course.

Conclusion

Spiritual care through SCAI shows feasibility, high acceptability, and promise in improving spiritual well-being and other important outcomes in advanced-stage cancer patients as well as moderate success in supporting their caregivers. Given healthcare shifts from acute care to ambulatory care settings, spiritual care and chaplaincy have an opportunity to make a parallel shift to support patients and their caregivers in outpatient settings. Future work should test the efficacy of SCAI in a randomized controlled trial in comparison with standard care for outpatient adults with cancer diagnoses.

Supplemental Material

Supplemental Material, sj-pdf-1-ajh-10.1177_10499091211042860 - Spiritual Care Assessment and Intervention (SCAI) for Adult Outpatients With Advanced Cancer and Caregivers: A Pilot Trial to Assess Feasibility, Acceptability, and Preliminary Effects

Supplemental Material, sj-pdf-1-ajh-10.1177_10499091211042860 for Spiritual Care Assessment and Intervention (SCAI) for Adult Outpatients With Advanced Cancer and Caregivers: A Pilot Trial to Assess Feasibility, Acceptability, and Preliminary Effects by Shelley E. Varner Perez, Saneta Maiko, Emily S. Burke, James E. Slaven, Shelley A. Johns, Olivia J. Smith, Paul R. Helft, Kathryn Kozinski and Alexia M. Torke in American Journal of Hospice and Palliative Medicine®

Footnotes

Authors’ Note

All authors made substantial contributions to this manuscript and meet the definition of authorship.

Acknowledgments

We are grateful for the contributions of chaplains, physicians, nurses, medical assistants, and other staff who contributed to the successful completion of the study, especially Joy Bilger Goehring, MDiv, Nasser Hanna, MD, and Kelly A. L. Mathis, MDiv.

Declaration of Conflicting Interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study was conducted with support from an internal grant from the Indiana University Health Values Fund, Indianapolis, Indiana; and Dr. Torke was supported by a Midcareer Investigator Award in Patient Oriented Research from the National Institute on Aging [K24 AG053794].

ORCID iDs

Shelley E. Varner Perez

Shelley A. Johns

Alexia M. Torke

Supplemental Material

Supplemental material for this article is available online.

References

Balboni

Vanderwerker

Block

Paulk

Lathan

Peteet

Prigerson

. Religiousness and spiritual support among advanced cancer patients and associations with end-of-life treatment preferences and quality of life. J Clin Oncol. 2007;25(5):555–560.

Ernecoff

Curlin

Buddadhumaruk

White

. Health care professionals’ responses to religious or spiritual statements by surrogate decision makers during goals-of-care discussions. JAMA Intern Med. 2015;175(10):1662–1669.

Murray

Kendall

Boyd

Worth

Benton

. Exploring the spiritual needs of people dying of lung cancer or heart failure: a prospective qualitative interview study of patients and their carers. Palliat Med. 2004;18(1):39–45.

Silvestri

Knittig

Zoller

Nietert

. Importance of faith on medical decisions regarding cancer care. J Clin Oncol. 2003;21(7):1379–1382.

Maiko

Johns

Helft

Slaven

Cottingham

Torke

. Spiritual experiences of adults with advanced cancer in outpatient clinical settings. J Pain Symptom Manage. 2019;57(3):576–586.

Delgado-Guay

Hui

Parsons

, et al. Spirituality, religiosity, and spiritual pain in advanced cancer patients. J Pain Symptom Manage. 2011;41(6):986–994.

Puchalski

. Spirituality in the cancer trajectory. Ann Oncol. 2012;23(suppl 3):49–55.

Bovero

Leombruni

Miniotti

Rocca

Torta

. Spirituality, quality of life, psychological adjustment in terminal cancer patients in hospice. Eur J Cancer Care (Engl). 2016;25(6):961–969.

Jim

Pustejovsky

Park

, et al. Religion, spirituality, and physical health in cancer patients: a meta-analysis. Cancer. 2015;121(21):3760–3768.

10.

Alcorn

Balboni

Prigerson

, et al. If God wanted me yesterday, i wouldn’t be here today: religious and spiritual themes in patients’ experiences of advanced cancer. J Palliat Med. 2010;13(5):581–588.

11.

Piderman

Kung

Jenkins

, et al. Respecting the spiritual side of advanced cancer care: a systematic review. Curr Oncol Rep. 2015;17(2):6.

12.

Williams

Meltzer

Arora

Chung

Curlin

. Attention to inpatients’ religious and spiritual concerns: predictors and association with patient satisfaction. J Gen Intern Med. 2011;26(11):1265–1271.

13.

Pearce

Coan

Herndon

JE II

Koenig

Abernethy

. Unmet spiritual care needs impact emotional and spiritual well-being in advanced cancer patients. Support Care Cancer. 2012;20(10):2269–2276.

14.

Mesquita

Chaves

ÉCL

Barros

GAM

. Spiritual needs of patients with cancer in palliative care: an integrative review. Curr Opin Support Palliat Care. 2017;11(4):334–340.

15.

Phelps

Lauderdale

Alcorn

, et al. Addressing spirituality within the care of patients at the end of life: perspectives of patients with advanced cancer, oncologists, and oncology nurses. J Clin Oncol. 2012;30(20):2538.

16.

Piderman

Radecki Breitkopf

Jenkins

, et al. The impact of a spiritual legacy intervention in patients with brain cancers and other neurologic illnesses and their support persons. Psychooncology. 2017;26(3):346–353.

17.

Sprik

Walsh

Boselli

Meadors

. Using patient-reported religious/spiritual concerns to identify patients who accept chaplain interventions in an outpatient oncology setting. Support Care Cancer. 2019;27(5):1861–1869.

18.

van Leeuwen

Schep-Akkerman

van Laarhoven

. Screening patient spirituality and spiritual needs in oncology nursing. Holist Nurs Pract. 2013;27(4):207–216.

19.

Ellis

Thomlinson

Gemmill

Harris

. The spiritual needs and resources of hospitalized primary care patients. J Relig Health. 2013;52(4):1306–1318.

20.

Torke

Maiko

Watson

, et al. The chaplain family project: development, feasibility, and acceptability of an intervention to improve spiritual care of family surrogates. J Health Care Chaplain. 2019;25(4):147–170.

21.

Moss

Lunney

Culp

, et al. Prognostic significance of the surprise” question in cancer patients. J Palliat Med. 2010;13(7):837–840.

22.

Koenig

Büssing

. The duke university religion index (DUREL): a five-item measure for use in epidemiological studies. Religions. 2010;1(1):78–85.

23.

Peterman

Fitchett

Brady

Hernandez

Cella

. Measuring spiritual well-being in people with cancer: the functional assessment of chronic illness therapy—spiritual Well-being Scale (FACIT-Sp). Ann Behav Med. 2002;24(1):49–58.

24.

Cohen

Mount

Strobel

Bui

. The McGill quality of life questionnaire: a measure of quality of life appropriate for people with advanced disease. A preliminary study of validity and acceptability. Palliat Med. 1995;9(3):207–219.

25.

Weitzner

Jacobsen

Wagner

Jr Friedland

Cox

. The caregiver quality of life index–cancer (CQOLC) scale: development and validation of an instrument to measure quality of life of the family caregiver of patients with cancer. Qual Life Res. 1999;8(1-2):55–63.

26.

Spitzer

Kroenke

Williams

Löwe

. A brief measure for assessing generalized anxiety disorder: the GAD-7. Arch Intern Med. 2006;166(10):1092–1097.

27.

Kroenke

Strine

Spitzer

Williams

Berry

Mokdad

. The PHQ-8 as a measure of current depression in the general population. J Affect Disord. 2009;114(1-3):163–173.

28.

Pargament

Feuille

Burdzy

. The brief RCOPE: current psychometric status of a short measure of religious coping. Religions. 2011;2(1):51–76.

29.

Steinhauser

Alexander

Olsen

, et al. Addressing patient emotional and existential needs during serious illness: results of the outlook randomized controlled trial. J Pain Symptom Manage. 2017;54(6):898–908.

30.

Labuschagne

Torke

Grossoehme

, et al. Chaplaincy care in the MICU: describing the spiritual care provided to MICU patients and families at the end of life. Am J Hosp Palliat Care. 2020;37(12):1037–1044.

31.

Muehlhausen

Foster

Smith

Fitchett

. Patients’ and loved ones’ expectations of chaplain services. J Health Care Chaplain. 2021;19:1–15.

32.

Sprik

Keenan

Boselli

Cheeseboro

Meadors

Grossoehme

. Feasibility and acceptability of a telephone-based chaplaincy intervention in a large, outpatient oncology center. Support Care Cancer. 2021;29(3):1275–1285.

33.

Snowden

. What did chaplains do during the covid pandemic? An international survey. J Pastoral Care Counsel. 2021;75(1_suppl):6–16.

34.

Religious Landscape Study: Adults in the Midwest. Pew research center. 2014. Accessed July 12, 2021. https://www.pewforum.org/religious-landscape-study/region/midwest/

Supplementary Material

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