Spirituality-Integrated Interventions for Caregivers of Patients with Terminal Illness: A Systematic Review of Quantitative Outcomes

Abstract

This systematic review of published quantitative research was conducted to explore the effects of spirituality-integrated interventions for informal caregivers of terminally ill patients. Multiple databases were searched for articles published between January 2004 and November 2019. Twelve randomized controlled trials were identified. Methodological quality was assessed using the revised Cochrane Collaboration’s tool for assessing risk of bias. Studies were notably diverse in terms of spiritual background, intervention design, technology used, and outcomes measures. Spirituality-integrated interventions were found to show positive outcomes for caregivers. However, methodological flaws negatively affected the quality of most studies, warranting further and rigorous research into the topic.

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ORIGINAL PAPER
Spirituality‑Integrated Interventions forCaregivers
ofPatients withTerminal Illness: ASystematic Review
ofQuantitative Outcomes
YongqiangZheng1 · AnnaCoxCotton1· LongtaoHe2 · LeslieGraceWuest1
Accepted: 23 February 2021
© The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature
2021
Abstract
This systematic review of published quantitative research was conducted to explore
the effects of spirituality-integrated interventions for informal caregivers of termi-
nally ill patients. Multiple databases were searched for articles published between
January 2004 and November 2019. Twelve randomized controlled trials were iden-
tified. Methodological quality was assessed usingthe revised Cochrane Collabora-
tion’s tool for assessing risk of bias. Studies were notably diverse in terms of spir-
itual background, intervention design, technology used, and outcomes measures.
Spirituality-integrated interventions were found to show positive outcomes for car-
egivers. However, methodological flaws negatively affected the quality of most stud-
ies, warranting further and rigorous research into the topic.
Keywords Spirituality· Terminal illness· Caregiver· Systematic review· Meta-
analysis
Introduction
Informal caregivers, such as a spouse, family member, or friend, provide a signifi-
cant amount of help and support for people with terminal illnesses. Although the
caregiving work is viewed as essentially rewarding and strongly associated with
increased self-efficacy and sense of worth, it is profoundly demanding. Regardless
of sex, age, or ethnicity, caregivers were found to experience greater psychological
distress (Sklenarova etal., 2015). It is evident that caregiver psychological distress
can lead to severe consequences, including impaired physical health such as fatigue
* Longtao He
lzhlt01@hotmail.com
1 School ofSocial Work, George Fox University, Newberg, USA
2 Institute ofSocial Development, Southwestern University ofFinance andEconomics, 55
Guanghuacun Road, Chengdu610074, China

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or sleep impairment (Song etal., 2012); elevated symptoms of depression and anxi-
ety (Oechsle etal., 2013); a lower health-related quality of life (Kim etal., 2015);
and greater perceived caregiving burden (Payne, 2010), among other outcomes.
Terminal illness impacts human functioning on all domains. It can trigger issues
of identity, autonomy, purpose, and meaning, etc. Simultaneously, terminal illness
can also lead to changes in family roles, dynamics, communication, and everyday
functioning. While coping with medical, practical, psychosocial, and spiritual uncer-
tainty in preparing for patient’s death and bereavement, caregivers were observed
to have spiritual needs similar to, and in certain times, even higher than those of
patients (Bowman etal., 2009; Ross & Austin, 2015; Taylor, 2003). Therefore, with
death impending, addressing the spiritual distress and needs of caregivers naturally
emerges as an important priority in health care (Puchalski, 2001). Caregivers, after
all, are often the primary support for both patients undergoing treatment and the rest
of the family system, making their ability to process their caregiving tasks spiritu-
ally impactful to other systems.
By definition, spirituality is ‘a dynamic and intrinsic aspect of humanity through
which persons seek ultimate meaning, purpose, and transcendence, and experience
relationship to self, family, others, community, society, nature, and the significant
or sacred’ (Puchalski etal., 2014, p. 646). Individual experiences of spirituality are
reflected by the awareness of being an essential part of the world. This awareness
can emerge through various forms, for example, a search for existential meaning,
life purpose, and a morally satisfying connection beyond the self and in relationship
with others, higher power, and/or the cosmos (Puchalski, 2008). Spirituality may
also be experienced through the practice of religion, or through an existential con-
nection with nature, relationships, and creative/intellectual endeavors (Canda & Fur-
man, 2009).
Research has found that reported spirituality is associated with better psycholog-
ical outcomes (Newberry et al., 2013; Puchalski, 2012); it can decrease isolation
(Heath etal., 2018), offer a source of comfort, increase healthy coping strategies,
and provide a context in which to explore the meaning or purpose of life (Wortmann
& Park, 2008). Caregivers reported that their faith helped motivate their decision
to endure many of the hardships of caregiving (Wells etal., 2008). Spiritual prac-
tices and beliefs can even enhance physical health by discouraging unhealthy coping
behavior throughout the course of terminal illnesses (Doka, 2011). However, ter-
minal illness can also impose challenges for people’s religious and spiritual beliefs,
causing anger, confusion, and feelings of being forsaken or abandoned (Nicholls,
2007). Further, caregivers who are struggling to find hope and feeling a sense of
abandonment and punishment by their God are also found to be associated with a
poorer quality of life and an increased risk of developing mental health disorders
(Pearce etal., 2006). These inconsistent findings raise more questions about the role
spirituality plays in caregiving for people with terminal illnesses and how it can be
better integrated in subsequent interventions.
Despite the prevalence and significance of spiritual distress and needs in the con-
text of advanced disease, these needs were often reported as neglected, and spir-
itual care was lacking (Selman etal., 2018). Further, research has revealed substan-
tial consequences when the spiritual needs were not met appropriately, including

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decreased quality of life (Cohen etal., 1996); increased level of anxiety and depres-
sion (McCoubrie & Davies, 2006; Wilson etal., 2007); suicidal ideation or loss of
the will to live (Chochinov etal., 2005); a greater fear of the loss of dignity (Chochi-
nov etal., 2002); more feelings of being a burden to others and hopelessness (Wil-
son etal., 2007); or resulting in a hindered or delayed grief resolution process and a
higher risk of prolonged grief among caregivers (Lai etal., 2014).
Within the broad and descriptive definition of spirituality, there are a myriad of
ways found in research in which practitioners engage their terminally ill clients spir-
itually across the healthcare system, such as behavioral training, psycho-education,
life review, dignity therapy, meaning-making therapy, prayer and meditation, music
therapy, bibliotherapy and creative art, group support (LeMay & Wilson, 2008).
Patients and their caregivers are found to utilize these interventions to understand
the illness, find meaning in the midst of the suffering, find hope in the process of
grief, loss, and eventually, promote their well-being while they are facing terminal
illnesses.
Over the past two decades, much has been published related to spiritually inte-
grated interventions. However, multiple recent systematic reviews or meta-analyses
have revealed that current publications are patient or care recipient focused (Brand-
stätter etal., 2014; Chen etal., 2018; Kruizinga etal., 2016; Maltoni etal., 2012)
or not in the field of terminal illness (Gonçalves etal., 2015). There are few stud-
ies evaluating the available spiritually integrated interventions targeting caregivers.
Therefore, little is known about the efficacy of these interventions.
In order to address the knowledge gap and develop a comprehensive perspective
on the impact of spiritually integrated interventions available to the caregiver popu-
lation, we conducted a systematic review of the literature and aimed to evaluate the
quality of the current randomized controlled trial research on the topic.
Methods
Inclusion Criteria
To be included in this review, an article had to meet the following criteria:
1. The intervention was focused on caregivers of people who are facing a life-threat-
ening condition (i.e., advanced disease, end-stage disease) or in hospice/palliative
care settings.
2. Caregivers were aged 18years or over and provided informal, unpaid care to a
person with terminal illness. No restriction was put on age, sex, or ethnicity of
caregivers and patients. The intervention was also eligible for inclusion if it was
implemented on both patients and caregivers simultaneously.
3. The intervention addressed the spiritual well-being of caregivers or contained a
spiritual aspect.
4. The eligible study was a randomized controlled trial or used a random assignment
method of allocating participants to intervention and control groups.
5. The study reported caregiver outcomes using quantitative self-reported measures.

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6. The study was published in a peer-reviewed journal in English between January
1, 2004, and November 15, 2019.
Exclusion Criteria
Publications that described an intervention or evaluated the feasibility of an inter-
vention but did not report caregiver outcomes were excluded, as were single case
studies and cohort studies. Publications that fulfilled the aforementioned criteria but
reported qualitative findings only were excluded, as were study proposals, as these
studies did not produce quantitative evidence of efficacy. Also excluded were arti-
cles in which the intervention targeted someone other than the caregivers, such as
the health professionals who are providing services to the patients and families.
Search Strategy
The literature search was performed using the following electronic databases: Aca-
demic Search Premier, Ageline, Scopus, SocINDEX, CINAHL, MEDLINE, Psy-
chology and Behavioral Science Collection, PsycINFO, Sociological Collection,
and TOPIC Search. Keyword formula used in our search are the following: (spiritu-
ality OR spiritual care OR religious care OR pastoral care OR spiritual intervention
OR spiritual therapy) AND (terminal illness OR terminal disease OR palliative care
OR end-of-life care) AND (caregiver OR family caregiver OR informal caregiver).
The initial search was conducted in July 2019, and an updated search was conducted
in January 2020. Reference lists of the included articles were hand-searched.
To our knowledge there are no systematic reviews of spiritually integrated inter-
ventions focused solely on caregivers of individuals with terminal illness. These
topics are occasionally discussed in systematic reviews of general psychological
interventions for caregivers or spiritual interventions for patients only. To ensure
thoroughness these reviews also were hand-searched for relevant studies.
Study Quality Evaluation
The revised Cochrane Collaboration’s tool for assessing risk of bias 2.0 in rand-
omized trials was used to evaluate study rigor and quality. This tool evaluates study
performance on five domains of bias: risk of bias arising from the randomization
process; risk of bias due to deviations from the intended interventions; risk of bias
due to missing outcome data; risk of bias in measurement of the outcome; risk of
bias in selection of the reported result and overall risk of bias judgment (Sterne
etal., 2019). Originally developed by the Cochrane Collaboration’s methods groups
in 2005 and updated in 2011, this tool is used to identify flaws in design, conduct,
analysis, and reporting that can cause the effect of an intervention to be underesti-
mated or overestimated.
All four authors reviewed each article to be included and participated in
extracting descriptive information for Table1. Each also evaluated risk of bias
independently. The authors then consulted to develop consensus regarding

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Table 1 Data extraction form
References Study design Location Sample size Disease/setting Intervention Spiritual aspect Outcome measure-
ment
Significant results/
conclusions
Applebaum etal.
(2018)
RCT USA n = 84 Cancer Self-administered
Care for the
Cancer Caregiver
Workshop (5
webcasts and
mailed materials)
Focus on spiritual
well-being, par-
ticularly personal
meaning and
purpose
LAP-R; CRA;
HADS; FACIT;
SWBS; BFS
Significant increase
in meaning and
enhanced ben-
efits of caregiv-
ing; decreases
in depressive
symptoms
Choi (2010) RCT USA n = 32 Hospice Care Music therapy
combined with
Progressive
Muscle Relaxa-
tion (PMR) (2,
30-min bi-weekly
sessions)
Rich spiritual
meaning of music
STAIS-S; FAVS;
CQOLC
No significant differ-
ence between inter-
vention and control
groups; significant
difference for
pre-posttest anxiety
and fatigue
Dionne-Odom etal.
(2016)
RCT USA n = 44 Cancer (advanced
stages)
A manualized
early palliative
intervention
(ENABLE III)
facilitated over
the phone (3
weekly phone
calls)
Specific ses-
sion topic on
mediation and
spirituality
PG13; CES-D Did not find any
statistical differ-
ence in outcome
measurements;
need more evi-
dence to support
the usefulness of
the intervention
Etemadifar etal.
(2014)
RCT Iran n = 100 Heart Failure Multimedia train-
ing sessions and
group support (4,
2-h weekly ses-
sions and phone
consultation as
needed)
Discussion of
importance of
caregiving to
Islam; Clergy as
part of interven-
tion team
ZBI Caregiver burden
was significantly
decreased, also
indicating potential
preventive effect
for caregiver
burden

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Table 1 (continued)
References Study design Location Sample size Disease/setting Intervention Spiritual aspect Outcome measure-
ment
Significant results/
conclusions
Fegg etal. (2013) RCT Germany n = 133 Palliative care Existential Behav-
ior Therapy in
group (6 sessions
totaling 22hrs.)
Session topics on
mindfulness,
finding meaning,
personal values,
and encourage-
ment to discuss
existential issues
BSI; SWLS;
WHOQOL-
BREF; PANAS
Medium to large
effects on anxiety
and QOL short
term; medium
effects on depres-
sion and QOL long
term; existential
behavioral therapy
showed beneficial
effects on distress
and QOL of car-
egivers
Holm etal. (2016) RCT Sweden n = 119 Palliative care Group therapy
and education
sessions (3, 2-h.
weekly sessions)
Discussion of
existential issues;
priest as part of
intervention team
PCS; CCS; RCS;
CBS; HI; HADS
Small improvements
in preparedness
and short-term
effect on compe-
tence; no effects on
rewards/burden or
anxiety/depression
Lapid etal. (2016) RCT USA n = 116 Cancer (advanced
stages)
Structured multidis-
ciplinary group
intervention,
emphasizing on
QOL (6, 90-min
sessions over
4weeks and 10
follow-up phone
calls)
Particular session
topic focused on
spirituality and
coping; measure-
ments of spiritual
well-being of
caregivers
CQOLC; LASA;
POMS-B
Improved spiritual
well-being and
some domains
of QOL; overall
decreased depres-
sion, anxiety, and
fatigue

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Table 1 (continued)
References Study design Location Sample size Disease/setting Intervention Spiritual aspect Outcome measure-
ment
Significant results/
conclusions
McLean etal.
(2013)
RCT Canada n = 42 Cancer (Metastatic) Dyadic Emotionally
Focused Therapy
(EFT) (8, 1-h.
weekly sessions)
Discussion of
existential issues
including spir-
ituality as part of
EFT
RDAS; BDI-II;
BHS; CBS;
RFCS
Significant improve-
ments for martial
functioning;
patients perceived
more empathic care
from caregivers; no
improvements for
caregiver burden/
depression/hope-
lessness
Milbury etal.
(2018)
Pilot RCT USA n = 10 Cancer (Glioma) Dyadic yoga (12,
45-min. sessions)
Guided meditation CES-D; BFI; SF-36 Improvements in
fatigue, depres-
sion and mental
domain of QOL for
caregivers
Mosher etal.
(2018)
RCT USA n = 25 Cancer (gastroin-
testinal)
Coping skills
telehealth inter-
vention focusing
on peer helping
task (5, 60-min.
weekly telephone
sessions and
mailed materials)
Focus on patient
and caregiver
spiritual well-
being
FACIT-SP;
PROMIS; DT;
MOCS; ZBI
Intervention and
control groups
both showed small
decreases in patient
and caregiver
fatigue and
caregiver distress
and burden; peer
helping does not
enhance spiritual
well-being

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Table 1 (continued)
References Study design Location Sample size Disease/setting Intervention Spiritual aspect Outcome measure-
ment
Significant results/
conclusions
Mosher etal.
(2019)
RCT USA n = 25 Cancer (advanced
lung)
Acceptance and
Commitment
Therapy (ACT)
(6, 50-min.
telephone ses-
sions and mailed
materials)
Mindfulness and
clarification of
personal values
as part of inter-
vention
PROMIS; DT;
PEACE
Significant effect on
struggle with the
disease; telephone-
based ACT is
feasible
Sotoudeh etal.
(2019)
RCT Iran n = 70 Hemodialysis (kid-
ney failure)
Family-based
education and
training program
(8, 90-min twice
weekly sessions)
Specific session
topic on strength-
ening spir-
itual dimensions
including prayer
therapy
ZBI Significant short-
term decrease in
caregiver burden;
no long-term effect
RCT: randomized controlled trial; LAP-R: finding meaning through caregiving scale Life Attitude Profile-Revised; CRA: caregiver reaction assessment; HADS: Hospital
Anxiety and Depression Scale; FACIT: Functional Assessment of Chronic Illness Therapy; SWBS: Spiritual Well-Being scale; BFS: benefit finding scale; STAIS-S: Spiel-
berger State Trait Anxiety Inventory; FAVS: fatigue visual analogue scale; CQOLC: caregiver quality of life index-cancer; ENABLE III: educate, nurture, advise, before
life ends; PG13: Inventory of Complicated Grief-short form; CES-D: Center for Epidemiological Studies-Depression measures; ZBI: Zarit Burden Interview; BSI: Brief
Symptom Inventory; SWLS: Satisfaction with life scale; WHOQOL-BREF: World Health Organization Quality of Life Instruments abbreviated version; PANAS: positive
and negative affect scale; PCS: preparedness for caregiving scale; CCS: caregiver competence scale; RCS: rewards of caregiving scale; CBS: Caregiver Burden Scale; HI:
the Health Index; LASA: Linear Analogue Self-Assessment; POMS-B: Profile of Mood States-Brief; RDAS: Revised Dyadic Adjustment Scale; BDI-II: Beck Depres-
sion Inventory-II; BHS: Beck Hopelessness Scale; RFCS: relationship-focused coping scale; CES-D: Center for Epidemiological Studies-Depression measures; BFI: brief
fatigue inventory; Sf-36: 36-item short-form survey medical outcomes study; FACIT-SP: Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being scale;
PROMIS: 6-item patient-reported outcomes measurement information system for fatigue; DT: distress thermometer; MOCS: measure of current status (MOCS); PEACE:
Peace, Equanimity, and Acceptance in the Cancer Experience questionnaire

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Table1 and study quality evaluation. The PRISMA (Preferred Reporting Items
for Systematic Reviews and Meta-analyses) Statement (Liberati etal., 2009) for
reporting systematic reviews was used to structure the analysis. The protocol for
this systematic review was registered on PROSPERO (CRD42020155551), the
international prospective register of systematic reviews.
Results
Study Inclusion
Four hundred and forty-eight articles were identified using the search crite-
ria described earlier. Another 29 were identified through supplemental searches
including a review of references cited in each relevant article and articles
included in systematic reviews that involved grief interventions. Of the 477 con-
sidered articles, 464 were excluded for a variety of reasons (Fig.1 flowchart of
selection procedure for eligible studies).
Reasons forExclusion
The majority of study exclusions were due to not meeting the RCT or random
assignment method of allocating participants to intervention and control groups
qualifications. One hundred and fifty-seven of the articles described the general
association between spirituality and caregivers to people with terminal illness,
but no specific interventions were implemented and were excluded from the final
results. Forty-three of the articles uncovered in the search results were systematic
reviews and therefore did not follow an RCT protocol. Nineteen of the articles
were studies focusing on single case studies, and thirty-two of the articles were
studies that reported qualitative outcomes only. Further, ten of the articles found
were study protocol reports without reported outcomes and twelve of the studies
were interventions that used a design other than a randomized controlled trial
design and were thus excluded.
Studies were also excluded because they lacked spirituality-related aspects
or targeted the wrong populations. Of those, forty-six of the articles reported
patient or helping profession outcomes only and another twenty-four of the arti-
cles focused on using spiritually integrated interventions on patients or caregivers
without terminal illness or end-of-life conditions. Sixty-five of the articles were
interventions with patients with terminal illness or their caregivers, but the inter-
ventions had no spiritual aspect or did not measure the spiritual well-being and
were excluded. The search also uncovered sixty-eight duplicate articles. Table1
displays the 12 included studies and describes the design, population, interven-
tion, outcome measurement, and significant results of each study.

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Fig. 1 Flowchart of selection procedure for eligible studies

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Study Quality
Using the revised Cochrane Collaboration’s tool 2.0, the overall risk of bias of each
included study was categorized into low risk of bias, some concerns, and high risk
of bias. A study was judged to be at ‘low risk of bias’ if all domains showed an
individual low risk of bias; a study was determined as ‘some concerns’ if there was
at least one domain showing some concern, but not any high risk ranking in an indi-
vidual domain; and a study was judged to be ‘high risk of bias’ if there was high risk
of bias in at least one domain or it had some concerns for multiple domains (Sterne
etal., 2019).
The risk of bias evaluation outcome is shown in Fig.2. Among 12 included RCTs
assessed with the RoB 2.0 tool, 4 judged as high risk of bias, 5 judged as having
some concerns, whereas the remaining 3 judged as low risk of bias. Four studies
mentioned randomization with very little or no further details; therefore, they were
judged as having some concerns regarding bias arising from randomization process
(Applebaum etal., 2018; Choi, 2010; Milbury etal., 2018; Sotoudeh etal., 2019).
Because of flaws in study design, four studies were judged as having some con-
cerns regarding bias due to deviations from the intended interventions (Choi, 2010;
Holm etal., 2016; McLean etal., 2013; Sotoudeh etal., 2019). Three studies were
judged as having some concerns regarding bias due to missing data (Applebaum
etal., 2018; Etemadifar etal., 2014; Lapid etal., 2016). Eight studies were judged as
having some concerns regarding bias in measurement of the outcome because par-
ticipants or assessors in these studies were found to be likely aware that they were
assigned to the intervention (Applebaum etal., 2018; Choi, 2010; Etemadifar etal.,
2014; Fegg etal., 2013; Holm etal., 2016; Lapid etal., 2016; Milbury etal., 2018;
Sotoudeh et al., 2019). One study was judged as having some concerns regard-
ing bias in selection of the reported result because the same person delivered the
intervention and collected the research data (Choi, 2010). One was judged as high
risk regarding bias in selection of the reported result because some data were not
reported in the final results (Lapid etal., 2016).
Study Characteristics
Among the twelve studies meeting the inclusion criteria, a large number of simi-
larities in participant characteristics were observed. However, the interventions,
outcome measurements, effects of the interventions, and statistical significances all
varied. Five studies came from international sources (Etemadifar etal., 2014; Fegg
etal., 2013; Holm etal., 2016; McLean etal., 2013; Sotoudeh et al., 2019), giv-
ing a small glimpse into the spiritual aspects of caregiving interventions around the
world. The remainder of studies came from the USA. American and other studies
focused in western countries shared strong similarities in demographics between
socioeconomic status and race. Most caregivers were female, and the majority were
also white and middle-class. Race, gender, and socioeconomic status were discussed
in multiple studies as potential limitations to the generalizability of their research

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Fig. 2 Risk of Bias Evaluation

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(Applebaum etal., 2018; Dionne-Odom et al., 2016; Lapid etal., 2016; Milbury
etal., 2018; Mosher etal., 2018, 2019).
Participant Characteristics
Seven hundred and fifty total caregivers were surveyed among the twelve studies
included. This small number reflects the equivalently small sample sizes of most
randomized clinical trials involving spiritually related interventions. As mentioned
earlier, the majority of caregiver participants surveyed were similar in demo-
graphic characteristics. In all but one trial, caregiver participants were more than
50% females, averaging around 72% of participants identifying as female, mostly in
the family roles of spouses or daughters. Fifty-nine percent of the participants were
indeed the spouse or life partner of the patient, including both men and women. One
study focused on interventions for spousal dyads specifically (McLean etal., 2013).
While others utilized dyads for their participant sample, they did not stipulate a
spousal relationship for participation (Milbury etal., 2018).
Illness Characteristics
Among the twelve studies meeting the inclusion criteria, cancer remains the primary
disease impacting most caregivers. One study focused on hemodialysis patients spe-
cifically (Sotoudeh etal., 2019), and another study focused on heart failure patients
(Etemadifar etal., 2014). Three other studies were conducted in a hospice or pallia-
tive setting without indicating specific diseases (Choi, 2010; Fegg etal., 2013; Holm
etal., 2016).
Intervention Characteristics
More than half of the studies utilized psychosocial therapeutic techniques through
family or group therapy (Applebaum et al., 2018; Dionne-Odom et al, 2016;
Etemadifar etal., 2014; Fegg et al., 2013; Holm et al., 2016; Lapid et al., 2016;
McLean etal., 2013; Mosher etal., 2018, 2019; Sotoudeh etal., 2019). The remain-
ing interventions focused on less traditional and more creative pursuits such as
dyadic yoga (Milbury etal., 2018) and music therapy (Choi, 2010). Other than car-
egiver overall well-being, the physical skills of caregiving were also included to be
improved by four studies (Applebaum etal., 2018; Dionne-Odom etal., 2016; Lapid
etal., 2016; Mosher etal., 2018).
The majority of studies utilized short-term interventions less than six sessions,
with a mean of 5.6 sessions, although one study employed as many as twelve ses-
sions for analysis (Milbury etal., 2018). Interventions also largely occurred in in-
person settings; 67% of studies included requiring a face-to-face caregiver inter-
action in some capacity. More technological options such as webcasts or over the
phone appointments, referred to as telehealth, were employed in four studies (Apple-
baum etal., 2018; Dionne-Odom etal., 2016; Mosher etal., 2018, 2019). Techno-
logical options for reaching participants were common. Even studies that utilized

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mostly in-person contact still used phone consultation or multimedia presentations
(Etemadifar etal., 2014; Lapid etal., 2016).
Intervention Professionals
The majority of the studies reviewed relied on a licensed or registered professional
to administer the trial intervention for research. Two studies from the same author
group, however, did deviate from this trend and utilized supervised student research-
ers instead (Mosher etal., 2018, 2019). Multidisciplinary teams made up of some
combination of nurses, doctors, psychologists, social workers, and clergymen/chap-
lains were a common trend for informal caregiver interventions with a spiritual
aspect.
Measurements Tools
There was a wide variability in measurement tools among the studies meeting the
inclusion criteria. Depression, anxiety, or hopelessness were measured by the Hos-
pital Anxiety and Depression Scale (Applebaum etal., 2018; Holm et al., 2016);
the Center for Epidemiological Studies-Depression scale (Dionne-Odom et al.,
2016; Milbury etal., 2018); the Beck Depression Inventory-II (BDI-II) and the Beck
Hopelessness Scale (BHS) (McLean etal., 2013); the Profile of Mood States-Brief
(POMS-B) (Lapid etal., 2016); the PROMIS scale for anxiety/depression (Mosher
etal., 2018, 2019), the Brief Symptom Inventory (BSI) (Fegg etal., 2013), and the
Spielberger State Trait Anxiety Inventory (STAI-S) (Choi, 2010).
Spiritual well-being was measured by the Functional Assessment of Chronic
Illness Therapy-Spiritual Well-Being scale (FACIT-SP) (Applebaum et al., 2018;
Mosher et al., 2018) and the Linear Analogue Self-Assessment (LASA) (Lapid
et al., 2016). The Life Attitude Profile-Revised (LAP-R) was used to assess the
sense of meaning and purpose in life (Applebaum etal., 2018). The Peace, Equa-
nimity, and Acceptance in the Cancer Experience questionnaire (PEACE) was used
to measure acceptance of the illness, focusing on struggles and peaceful acceptance
(Mosher etal., 2019).
Caregiver burden was assessed by the Zarit Burden Interview (Etemadifar etal.,
2014; Mosher etal., 2018; Sotoudeh etal., 2019) and the Caregiver Burden Scale
(Holm etal., 2016; McLean etal., 2013). The Borg Rating of Perceived Exertion
Scale was used to gauge the perceived negative impacts and stresses of caregiv-
ing (Milbury etal., 2018). The Caregiver Reaction Assessment (Applebaum etal.,
2018) and the Profile of Mood States-Brief (POMS-B) (Lapid et al., 2016) were
other instruments focused on the impact of caregiving tasks on negative emotions.
The positive and negative affect scale (PANAS) was used to record the caregivers’
changes in affect in relation to the patients they were caring for (Fegg etal., 2013).
Caregiving distress levels were captured using the Distress Thermometer (Mosher
et al., 2018, 2019). One study measured grief symptoms in caregivers using the
Inventory of Complicated Grief short-form (Dionne-Odom etal., 2016). Caregiving
preparedness was measured by the Caregiver Competence Scale and the Prepared-
ness for Caregiving Scale (Holm etal., 2016).

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Journal of Religion and Health
The positive sides of caregiving were also included in the measurements. The
meaning, rewards, and positive benefits of caregiving were established through the
use of the Rewards of Caregiving Scale (Holm etal., 2016), the Finding Meaning
through Caregiving Scale and the Benefit Finding Scale (Applebaum etal., 2018).
The coping confidence subscale of the Measure of Current Status (MOCS) was used
to measure caregiver self-efficacy for coping with challenging situations (Mosher
etal., 2018).
Quality of life was determined by the Caregiver Quality of Life Index-cancer
(Choi, 2010) and the Linear Analog Self-Assessment (Lapid etal., 2016), the Satis-
faction with Life Scale (SWLS) and the World Health Organization Quality of Life
Instruments abbreviated version (WHOQOL-BREF) (Fegg etal., 2013), the Medi-
cal Outcomes Study 36-item short form (Milbury etal., 2018) and the PEACE ques-
tionnaire (Mosher etal., 2019).
Although physical symptom assessments were primarily for patients in treat-
ment and not their caregivers, there were some studies that measured the physical
health of caregivers. Fatigue was the most common physical symptom tracked for
caregivers, measured by the Brief Fatigue Inventory (BFI) (Milbury et al., 2018),
the Patient-Reported Outcomes Measurement Information System (PROMIS) short-
form fatigue measure (Mosher etal., 2018, 2019), the Health Index (Holm etal.,
2016), and the Fatigue Visual Analogue Scale (FVAS) (Choi, 2010).
Since caregiving tasks are typically focused on a dyadic relationship, two eligi-
ble studies measured the relationship between caregiver and the care recipient using
the PROMIS short-form emotional support measure (Mosher etal., 2018) and the
Revised Dyadic Adjustment Scale (McLean etal., 2013).
Outcomes ofSpirituality‑Integrated Interventions forCaregivers
Spiritual Well‑being
Four studies reported the effect of spirituality-integrated interventions on caregiver
spiritual well-being. Three out of the four found the interventions were helpful to
improve caregivers’ spiritual well-being (Applebaum etal., 2018; Lapid etal., 2016;
Mosher etal., 2019). Applebaum etal. (2018) found that the self-administered web-
cast-based Meaning Centered Psychotherapy (Care for the Cancer Caregiver Work-
shop) was beneficial for the spiritual well-being of cancer caregivers, particularly in
finding meaning and benefit in caregiving. Lapid etal. (2016) reported a structured
multidisciplinary group intervention had positive effect to improve spiritual well-
being of caregivers to advanced cancer patients, by addressing multiple aspects of
spirituality such as life review, meaning and purpose, grief, hope and blessings, spir-
itual resource. Mosher etal. (2019) investigated the efficacy of a telephone-based
Acceptance and Commitment Therapy for family caregivers of advanced lung can-
cer patients, finding that the caregivers had less struggles with the disease after the
intervention. Mosher etal. (2018) utilized a telephone-based intervention, focusing
on peer helping tasks and coping skills for patients and caregivers and found this
approach did not improve their spiritual well-being.

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Burden orDistress
Nine studies explored the effect of spirituality-integrated interventions on caregiver
burden or distress. Only two studies reported the interventions led to significant
decrease in perceived burden or distress by caregivers (Etemadifar et al., 2014;
Sotoudeh etal., 2019).
Depression andAnxiety
Ten studies evaluated the effect of spirituality-integrated interventions on depressive
and anxious symptoms of caregivers. Four of the tenreported the interventions had
significant effect to reduce caregivers’ depression and anxiety (Applebaum etal.,
2018; Fegg etal., 2013; Lapid etal., 2016; Milbury etal., 2018).
Quality ofLife
Five studies investigated the effect of spirituality-integrated interventions on QOL
of caregivers. Three of the five reported the interventions had a positive effect to
increase overall QOL or some domains of QOL for caregivers (Fegg etal., 2013;
Lapid etal., 2016; Milbury etal., 2018).
Physical andEmotional Fatigue
Five studies explored the effect of spirituality-integrated interventions on overall
fatigue symptoms of caregivers, either it is physical fatigue, emotional fatigue, or a
combination of both. One of the five reported the intervention was helpful to reduce
physical and emotional fatigue symptoms of caregiving (Milbury etal., 2018).
Reward ofCaregiving andRelationship
Three studies evaluated the effect of spirituality-integrated interventions on the
rewards or benefits of caregiving. One of the three reported the intervention was
helpful to finding personal rewards or benefits in caregiving (Applebaum etal.,
2018). Two studies investigated the effect of spirituality-integrated interventions
on relationships between the caregiver and care recipient. One found significant
improvements for marital relationship functioning, with cancer patients perceived
more empathic care from their caregivers (McLean etal., 2013).
Discussion
This systematic review aimed to assess the effectiveness of spirituality-inte-
grated interventions for caregivers of patients with terminal illness across mul-
tiple studies. Overall, this systematic review suggests there is evidence of feasi-
bility, effectiveness and general mental, physical and spiritual improvement in
caregivers who undergo an intervention integrating some kind of spirituality.

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Journal of Religion and Health
This finding is consistent with current research on care recipients or patients
(Brandstätter etal., 2014; Chen etal., 2018; Kruizinga etal., 2016).
The study findings also highlighted the diversity and richness of the interven-
tions for caregivers, indicating the trend of addressing caregivers’ spiritual needs
across culture, religion, language, nationality, and geological location. With
the broadened concept of spirituality, the study findings were able to identify a
spectrum of spirituality in the included interventions, which integrates mindful-
ness, meditation, meaning, value and purpose, existential issues, and prayers.
Based on the unique background of certain caregiver groups, the approaches of
the interventions show strong heterogeneity as well. Other than typical psycho-
social therapies among individuals, groups, and families, this study identified
multiple alternative ways to address caregivers’ spiritual stress, such as music
therapy, meditation, and yoga, with most of the interventions showing poten-
tial. Along with the different formats of the interventions, diversity was also evi-
dent in the spiritual care providers, trained psychologists, therapists, palliative
nurses, social workers, and clergy members identified by the study. This study
found that technology-based interventions have been introduced to caregivers of
people who are terminally ill. Five of twelve included studies have integrated
some kind of technologies, varying from telephone calls to webcasts and online
multimedia content.
Among the 12 included studies, only four delivered interventions targeted
particularly to caregivers. The majority (67%) targeted both care recipient and
caregiver. This study also uncovered the lack of interventions addressing the
unique and urgent needs of caregivers. This finding is consistent with current
research (Selman etal., 2018), indicating that caregiver’s spiritual distresses are
viewed as attached to the patients’ needs and have not become a priority of the
health provider team yet. The study revealed that not only were there a very
limited number of randomized controlled trial interventions for caregivers, but
also the majority of the included studies lacked scientific rigor. This could be
due to a variety of factors. Research on individuals with terminal illness and
their caregivers has been historically underfunded, forcing researchers to report
retrospective findings, case studies, and small pilot studies rather than conduct-
ing and reporting on larger, multisite, randomized controlled clinical trials. A
lack of scientific rigor was also evident in the absence of blinding procedures in
many of the studies reviewed. Seven of the studies had some concerns in terms
of blinding of participants and personnel, and three studies were at high risk
of bias due to a lack of blinding for both participants and personnel. In total,
83% of the studies lacked blinding in some form for participants and person-
nel. Majority (67%) of studies did not report using blinded outcome assessors
or, in some cases, openly reported that the assessors were not blinded. Further,
recruitment difficulties and high attrition may have also caused a lack of scien-
tific rigor. Recruitment difficulties occurred because patients were referred late
in their disease process. High attrition due to escalation of the patient’s illness
and/or patient death remains a common problem in researching people with ter-
minal illness and their caregivers.

Journal of Religion and Health
1 3
Limitations
Strengths and limitations of this review were evaluated by all authors. The review
utilized an extensive, comprehensive, and reproducible search strategy. It utilized a
rigorous and transparent study quality assessment and applied strict inclusion and
exclusion criteria. Generalization is one main challenge of this review due to the fact
that none of the studies utilized the same outcome measures or instruments, there-
fore limiting comparisons of outcomes. Even though a common set of outcomes is
essential for comparisons and to facilitate systematic reviews and meta-analyses,
there is little agreement on standardized measures to be used in research (Kaasa &
Caraceni, 2010). Heterogeneous formats, durations, and frequencies of the interven-
tions also add to the difficulty to generalizing and comparing the overall effective-
ness of the interventions. The other limitation of the review is the inclusion of only
English articles published in the past 15 years and its limited review of the gray
literature on this topic.
Conclusion
This review identified some critical implications for current clinical practice and
future research. First of all, the study findings indicate more attention is needed
to address caregivers’ spiritual needs for healthcare professionals, preferably in a
model where caregivers are treated equally to their care recipients. Secondly, more
emphasis on cultural humility and competency is needed in spirituality-integrated
interventions. Practitioners need to be cautious of the suitability of implementing
an intervention without investigating clients’ unique cultural, spiritual, and religious
background. Third, more high-quality studies with rigorous methods are needed in
this area. The findings of this review uncovered that researchers involved in design-
ing and conducting randomized controlled trials need to increase their awareness
about potential risk of bias and minimize the methodological flaws in random
sequence generating, blinding, reporting, etc. Fourth, cross-culturally validated car-
egiver spiritual needs and well-being measuring instruments need to be developed.
Reaching agreement on standardized measures could be challenging for researchers;
however, it would benefit all future research in the long run.
Overall, this review found support for spirituality-integrated interventions for
caregivers to people with terminal illness. Methodological factors were major lim-
itations in this body of literature. However, most caregivers involved reported an
increased sense of spiritual well-being and improved physical and mental status in
caregiving. All studies found some positive results to support the feasibility and
effectiveness of the intervention. Further, rigorous research is needed that compares
spirituality-integrated interventions to routine care in larger samples.
Funding This systematic review was supported in part by the George Fox University Grant
GFU2020G04.

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Journal of Religion and Health
Declarations
Conflicts of interest The authors declare that they have no conflicts of interest.
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