Supportive Care in Cancer (2023) 31:259

https://doi.org/10.1007/s00520-023-07722-6

REVIEW

Demoralization and spirituality in oncology: an integrative systematic

review
Ana Cláudia Mesquita Garcia1 · Milena Schneiders1 · Kárita Santos da Mota1,2 ·
Vander Monteiro da Conceição1,3 · David W. Kissane4,5,6

Received: 13 December 2022 / Accepted: 1 April 2023

© The Author(s), under exclusive licence to Springer-Verlag GmbH Germany, part of Springer Nature 2023

Abstract
Objective To synthesize the scientific findings on demoralization and spirituality in the oncology context.
Methods This is an integrative systematic review, in line with the PRISMA 2020 guidelines, as proposed by Whittemore
and Knalf (2005). The MEDLINE via PubMed, Scopus, Web of Science, APA PsycNet, CINAHL, Cochrane Library,
EMBASE, and LILACS databases were searched without limitations regarding language or year of publication. The studies
were screened for inclusion according to the predefined eligibility criteria. Data extraction and evidence quality assessment
were performed.
Results Out of the 1587 articles evaluated, 10 studies were included in this review. In general, it was found that demoraliza-
tion tends to increase with the proximity of death and seems to be inversely related to spirituality, with spiritual well-being
being a protective factor against demoralization, while the non-fulfillment of spiritual needs is related to increased demorali-
zation in people with cancer. Furthermore, even among caregivers of people with advanced cancer, demoralization seems to
be associated, among other factors, with spiritual suffering. These results should be analyzed with caution, considering that
the studies included in this review are all observational studies, which prevents establishing cause and effect relationships.
Conclusions Demoralization tends to increase with growing frailty and the proximity of death in people with cancer, and it
seems to be inversely related to spirituality, both in these patients and in their caregivers.

Keywords Cancer · Demoralization · Existential distress · Spirituality

Introduction

Demoralization, an important expression of existential dis-

tress in palliative care, is a syndrome defined by feelings
* Ana Cláudia Mesquita Garcia of helplessness, hopelessness, incompetence through loss
[email protected]
of meaning or purpose, and decreased self-esteem, usually
1
Interdisciplinary Center for Studies in Palliative Care, associated with severe diseases such as cancer [1, 2]. The
School of Nursing, Federal University of Alfenas (UNIFAL- demoralization syndrome has been proposed as an important
MG), Gabriel Monteiro da Silva Street, 700, Centro, Alfenas, diagnosis that can guide the management of difficult cir-
MG 37130‑001, Brazil
cumstances [1], such as when, with the proximity of death,
2
University of São Paulo at Ribeirão Preto College individuals perceive themselves to be worthless and living
of Nursing, WHO Collaborating Centre for Nursing Research
Development, Ribeirão Preto, Brazil a futile and meaningless life, which can result in despair [3].
3 Among cancer patients, this syndrome had an average
Department of Nursing, Federal University of Fronteira Sul,
Chapecó, Brazil prevalence of 24 to 36% in studies conducted between the
4 years 2014 and 2020 worldwide, a prevalence higher than
University of Notre Dame, Sydney, Australia
that found in studies involving non-oncology populations
5
Cunningham Centre, St Vincent’s Hospital, Sydney, Australia (24 to 32%) [4]. According to the literature, demoralization
6
Szalmuk Family Psycho Oncology Research Unit, Cabrini is associated with higher death anxiety [5], greater exis-
Health and Monash Partner’s Comprehensive Cancer Centre, tential distress [6], worse psychological well-being [7, 8],
Melbourne, Australia

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259 Page 2 of 14 Supportive Care in Cancer (2023) 31:259

depression [9], suicidal ideation [10], and decreased quality of future studies, considering what is already known about
of life [9, 11]. the subject and what we still need to advance.
Although demoralization is among the most debilitat-
ing conditions in people with serious diseases, it is still
a neglected topic in the context of palliative care due to Methods
several factors, among them, the scarcity of documented
interventions for the treatment of this condition [12] and Design
beyond meaning-centered and psilocybin-assisted psycho-
therapy [13, 14]. However, it is worth noting that recent A systematic integrative approach was used to develop this
studies suggest an inverse association between spirituality review, allowing the analysis and synthesis of data from
and demoralization, such that the higher the levels of spir- an emerging research field [21, 22]. A systematic, theory-
ituality, the lower the demoralization among people with driven approach was used, including (1) a systematic search
cancer [9, 11, 15]. For example, according to the results of a of peer-reviewed published literature; (2) the five steps of
recent study that evaluated the relationship between demor- the integrative literature review methodology proposed by
alization and clinical and psychological variables in patients Whittemore and Knafl [21]: problem identification, literature
with advanced cancer, spirituality was inversely related to search, data evaluation, data analysis, and presentation; and
demoralization [16]. (3) PRISMA 2020 (Preferred Reporting Items for Systematic
In this study, spirituality is understood as “a dynamic reviews and Meta-Analyses) guidelines for reporting this
and intrinsic aspect of humanity through which people seek review [23].
ultimate meaning, purpose, and transcendence, in addition The present review’s protocol is registered in the Open
to experiencing a relationship with the self, family, others, Science Framework (https:// ​ o sf. ​ i o/) available at DOI
community, society, nature, and the significant or sacred. 10.17605/OSF.IO/94T67.
Spirituality is expressed through beliefs, values, traditions,
and practices” [17]. A recent study was conducted to review
evidence concerning spirituality in serious illness and health Problem identification
[18]. Some of the results of this systematic review indicated
that “spirituality is important for most patients; spiritual Aiming to synthesize the available scientific outcomes about
needs are common; spiritual care is frequently desired by demoralization and spirituality in the oncology context,
patients; spiritual needs are infrequently addressed in medi- this protocol was developed based on the following guiding
cal care; spirituality can play a role in medical decision mak- question: “What is the available evidence in the literature on
ing; spiritual care is infrequent in medical care; unaddressed demoralization and spirituality in oncology?”
spiritual needs are associated with poorer patient quality of
life; and provision of spiritual care is associated with better Literature search
patient end-of-life outcomes” [18]. In a study exploring the
relationship between spirituality/religiosity and physical and Aiming to perform a comprehensive search that identifies
mental quality of life among cancer survivors, the mental the maximum number of eligible primary sources, two strat-
quality of life of those with high spirituality was signifcantly egies were used to retrieve the studies of interest for this
higher than those with low spirituality [19]. Balboni et al. review, namely, bibliographic databases and hand-search
[18] suggest that addressing spirituality in the care of peo- sources [21, 24].
ple with serious illness is part of person-centered, value- A preliminary search was carried out in the PubMed (US
sensitive care. National Library of Medicine) database to determine the
Despite growing evidence, the role of spirituality on keywords and descriptors most commonly used to index
demoralization in serious illness has not been systematically studies related to the themes of interest in this review. Key-
assessed. In this context and considering that demoralization words and descriptors were combined using the Boolean
is more common in cancer patients, especially those with operators AND and OR to develop the search strategy, which
advanced cancer, and therefore research on demoralization was adapted according to the specificities of each database
in this population is on the rise [20], the aim of this review searched: MEDLINE via PubMed, Scopus, Web of Science,
was to synthesize the scientific findings on demoralization APA PsycNet, CINAHL, Cochrane Library, EMBASE, and
and spirituality in the oncology context. By synthesizing LILACS (Supplementary Material). The search strategy was
the scientific literature on demoralization and spirituality in developed with the assistance of a librarian.
cancer patients, this study may contribute to evidence-based The reference lists of the included studies were also
clinical practice in relation to the care of this population. It checked in order to identify possible studies that could fit
may also help researchers of these topics in the development this review’s eligibility criteria [24].

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Supportive Care in Cancer (2023) 31:259 Page 3 of 14 259

Eligibility criteria systematic comparison of primary sources on specific

themes, in the case of this study, those pertaining to demor-
The following eligibility criteria were set: alization and spirituality. The data display step involved
converting the data extracted from the individual sources
• Types of studies: This review included only primary into a single display frame around the variables demoraliza-
studies (experimental or observational, quantitative or tion and spirituality in order to ease data comparison. In the
qualitative). Secondary studies, case reports, case series, comparison step, the primary source data was examined in
case studies, commentaries, opinions, letters, or editori- order to identify patterns, themes, or relationships across the
als were excluded. There were no limitations regarding data collected. Finally, the patterns identified provided the
the publication year or language. establishment of this review’s conclusions.
• Types of participants: Studies whose population con-
sisted of cancer patients and/or their family caregivers Critical evaluation of the studies
and/or healthcare professionals were included. No age,
sex, and ethnic origin limitations were established. The evaluation of the quality and levels of evidence of the
• Types of results: The results of interest for this review included studies was carried out by one of the researchers
were those related to spirituality and demoralization in (MS), using the Evidence Level and Quality Guide-Johns
the oncology context. Hopkins Nursing Evidence-Based Practice [27].

Data evaluation
Results
The results retrieved from the databases were exported to
EndNote (EndNote Web, Clarivate, Philadelphia—https://​
In order to organize the presentation of the results, they are
www.​myend​notew​eb.​com) for the removal of duplicate arti-
presented in two sections: “Study characteristics and qual-
cles. Subsequently, the articles were loaded into the Rayyan
ity” and “Demoralization and spirituality.”
software [25] to carry out study selection.
The study selection was carried out by evaluating the
titles, abstracts, and keywords according to the eligibility Study characteristics and quality
criteria. Relevant articles were read in full, and those that
failed to meet this review’s eligibility criteria were excluded. Out of 1587 articles evaluated, 10 studies were included
The study selection process was carried out independently in this review (Fig. 1). Among the included articles, only
by two reviewers (KSM and MS). During unblinding, when one was published in 2006 [28]; the others were published
disagreements occurred between the reviewers regarding between 2019 and 2023. The data extracted from the studies
the inclusion/exclusion of studies, these were discussed and are synthesized in Table 1.
agreed upon, and when necessary, a third reviewer (ACMG) With the exception of one study that was conducted with
participated to reach an agreement. The reviewers were not family caregivers of people with cancer at the end of life
blinded regarding the publication journal, authors, or institu- (n = 142) [32], all the others were conducted with cancer
tions during any step of the selection process. patients, with a total of 2439 patients studied. Of these, five
The data were extracted using an instrument developed were carried out with people in the terminal stage of the
and tested by the authors, which included the following disease/end of life [11, 15, 16, 28–30]. In the other studies,
items: authorship, publication year, country of study, objec- it is stated that the sample consists of cancer patients, but
tive, population and sample, context, measurements related without specifications regarding the stage of disease progres-
to spirituality and demoralization, the main results, and con- sion [9, 10, 31].
clusions regarding the relationship between spirituality and Regarding the level of evidence, all included studies were
demoralization. considered to have a level of evidence III, i.e., non-experi-
mental studies (cross-sectional study type). Regarding the
Data analysis quality of evidence, the studies were classified as A (high
quality) [9, 16, 28–32] and B (good quality) [10, 11, 15, 31].
The data analysis for this review was performed as proposed
by Whittemore and Knalf [21], following the steps of data Demoralization and spirituality
reduction, data display, data comparison, conclusion draw-
ing, and verification [26]. For data reduction, data extrac- The Karnofsky Performance Status score records reduced
tion and coding from primary sources were performed to functionality and greater frailty, which is associated with
organize the data into a manageable structure to ease the

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259 Page 4 of 14 Supportive Care in Cancer (2023) 31:259

Identification of studies via databases and registers Identification of studies via other methods

Id Records identified from: Records removed before Records identified from:

en Databases screening: Citation search (n=6)
tifi (n=1579) Duplicate records removed Manual search (n=2)
ca (excluded by Endnote web) (n =
tio 715)
n

Sc Records screened Records excluded (excluded by a

re (n = 857) human)
en (n = 772)
in
g

Reports sought for retrieval Reports not retrieved Reports sought for retrieval Reports not retrieved
(n = 85) (n = 4) (n = 8) (n = 0)

Reports assessed for eligibility Reports excluded: Reports assessed for eligibility Reports excluded:
(n = 81) wrong study design/publication (n = 8) wrong study design/publication
type (n = 73) type (n= 6)

In Studies included in the review

cl (n = 10)
ud
ed

Fig. 1  PRISMA 2020 flow diagram for new systematic reviews, which included searches of databases, registers, and other sources [23]

increased demoralization [11, 15, 16, 29, 30] and also cor- The single study on caregivers of patients with cancer
responds with closeness to death. [32] revealed prominent demoralization in this population,
Further synthesis of patients’ symptoms emphasizes this which was more closely associated with spiritual and psy-
inverse relationship of spiritual well-being and demorali- chological distress than with challenges related to caregiv-
zation. One important dimension of spiritual wellness is a ers’ personal time, social roles, physical states, and financial
sense of inner peace, which was well shown in the study resources.
of Jacobsen and colleagues to be decreased by demorali- For measuring demoralization, the most commonly used
zation, which in turn was separate to clinical depression instrument was the Demoralization Scale (DS), in Chinese
[28]. Another dimension of spiritual well-being is found in [9, 15], Mandarin [10, 31], and Italian [11, 16, 29, 30, 32]
the meaning of life that generates fulfilment and a sense versions. Regarding spirituality, the Functional Assessment
of accomplishment from a life well lived. Studies revealed of Chronic Illness Therapy–Spiritual Well-Being (FACIT-
how any loss of meaning and purpose decreased coping and Sp-12) was the most commonly used instrument among the
reduced quality of life while increasing demoralization [9, included articles [11, 16, 29, 30].
16, 29]. A third dimension that was clearly important was
hope, which might be transcendent in its nature and be sol-
idly located in religious belief about the future, one that Discussion
surpasses human life and considers the supranatural or the
sacred [9, 30]. Bodily integrity and health are nonetheless This integrative systematic review was aimed at synthesizing
critical, with frailty increasing some risk of demoralization the scientific production on demoralization and spirituality
developing when poor symptom control, loss of independ- in the oncology context. According to the results, in gen-
ence, and mastery over the body interfere with quality of life eral, it was found that demoralization tends to increase with
and exacerbate existential or spiritual distress [10, 11, 30, the proximity of death and seems to be inversely related to
31]. Sleep quality was one straightforward example of how spirituality and that spiritual well-being is a protective factor
loss of health precipitated demoralization [31], while the against demoralization, while the unmet spiritual needs are
development of suicidal ideation illustrated the importance related to increased demoralization in people with cancer.
of recognizing demoralization in the clinical setting [31]. Thus, as Zimmermann and Mathews [33] propose, the early

13
 Table 1  Data extracted from the selected studies that examine both demoralization and spirituality*
Authorship Design/country Population (sample)/context Objective Measurements related to spir- Main results Conclusions
ituality and demoralization

Jacobsen et al. 2006 [28] Cross-sectional study/USA Patients with a diagnosis of To determine whether a cluster - Demoralization: potential The demoralization factor The demoralization symptoms
advanced cancer (presence of of symptoms interpreted indicators of demoralization consists of seven feelings, are distinct from depressive
distant metastases and failure as demoralization could be stemmed from the following namely, (1) lack of control symptoms and seem to be
of first-line chemotherapy) (n identified and distinguished scales: helplessness, from over life, (2) life is a burden associated with the patient’s
Supportive Care in Cancer

= 242)/hospital from a cluster of depressive the SCID, McGill Quality of rather than a gift, (3) life has level of inner peacefulness
symptoms Life Questionnaire (MCG), been pointless, (4) life lacks
and the Brief COPE (BC); meaning and purpose (these
hopelessness, from the Com- first four were the most
plicated Grief Assessment concerning in the last 2 days
(CGA); despair, from the of life), (5) feeling anger/
MCG; sense of failure, from love regarding the cancer
(2023) 31:259

the SCID and the MCG; loss diagnosis, (6) without your
of meaning, from the CGA own health life is empty, and
and the MCG; inability to (7) the future is meaning-
cope, from the CGA, the less (Cronbach’s a = 0.78).
Yale Evaluation of Suicidal- Regression analyses showed
ity (YES), the General that the demoralization
Self-Efficacy Scale (GSES), syndrome was significantly
and the Brief Cope; anger/ associated with a decreased
bitterness, from the CGA level of inner peace (OR =
were added as they would 0.63, 95% CI = 0.47-0.82,
reflect the lack of acceptance p = 0.0008), an association
of the patient’s terminal dis- not identified in relation to
ease; and brooding, self-pity, MDD (OR = 0.91, 95% CI =
or pessimism from the SCID 0.66–1.24, p = 0.55)
were added as it reflected
hopelessness
- Spirituality: the NIA/Fetzer
multidimensional measure-
ment of religiousness/
spirituality for use in health
research
Page 5 of 14
259

13
 Table 1  (continued)
259

Authorship Design/country Population (sample)/context Objective Measurements related to spir- Main results Conclusions
ituality and demoralization

13
Bovero et al. 2019 [29] Cross-sectional study/Italy End-of-life cancer patients; To investigate the prevalence - Demoralization: Demoraliza- Demoralization (mean ± SD) The data could suggest that
estimated life expectancy of demoralization in end-of- tion Scale-Italian version = 35.04 ± 15.01. 27.2% of demoralization could increase
less than 4 months; Kar- life cancer patients and its (DS-IT) the participants (n = 64) pre- with the proximity of death
Page 6 of 14

nofsky Performance Status associations with the medical - Spirituality: The Functional sented low demoralization, and with impaired clinical
(KPS) average score = 39.72 and psychosocial variables Assessment of Chronic 50.2% (n = 118) medium, conditions. In particular, the
± 9.2 (n = 235)/hospital Illness Therapy – Spiritual and 22.6% (n = 53) high five demoralization dimensions
Well-Being (FACIT-Sp-12) demoralization. People at that emerged could represent
the end of life (average life the typical concerns around
expectancy of 27 days and a which the syndrome evolves
KPS mean value of 39.72) in end-of-life cancer patients.
presented higher levels of Finally, spiritual well-being
demoralization than what has could play a protective role
been reported in other stud- regarding demoralization
ies carried out with people
with advanced cancer, but
not necessarily at the end of
life. Factor analysis indicated
five factors related to demor-
alization: (1) emotional
distress and the inability to
cope, (2) loss of purpose and
meaning, (3) worthlessness,
(4) a sense of failure, and (5)
dysphoria. The researchers
also found a significant asso-
ciation between the severity
of demoralization and
indicators of spirituality, so
that the greater the severity
of demoralization, the lower
the level of spiritual well-
being (Bovero et al., 2019).
Also, in this same study,
the researchers suggest the
protective function of spir-
itual well-being regarding
demoralization and loss of
purpose and meaning related
to dignity and existential
distress
Supportive Care in Cancer
(2023) 31:259
 Table 1  (continued)
Authorship Design/country Population (sample)/context Objective Measurements related to spir- Main results Conclusions
ituality and demoralization

Liu and Hsiao 2019 [15] Cross-sectional study/China Terminally ill patients who To investigate the demoraliza- - Demoralization: Demoraliza- Demoralization (mean ± SD) Demoralization is a common
were receiving hospice tion and spiritual-well-being tion Scale (Chinese version) = 42.32 ± 16.00. Of the problem in people with
care at the time of the study status of terminally ill - Spirituality: Spiritual 82 participants surveyed, terminal diseases and is an
(n = 82)/hospital patients and to determine the Well-Being Scale (Chinese 81.7% had high levels of important factor affecting the
Supportive Care in Cancer

value of demographic data, version) demoralization. The average spiritual well-being in this
disease characteristics, and spiritual well-being score patient population. In clinical
demoralization in predicting for the participants was 31.7 practice, early assessment and
spiritual well-being (moderate). A significant identification of demor-
and negative correlation was alization in patients as well as
found between the level of establishing relevant models
demoralization and the level of care for demoralization
of spiritual well-being (r = are necessary to help patients
(2023) 31:259

-0.600, p < 0.01). Regression attain spiritual well-being at

analysis showed that, after the end of life
adjusting for demographic
characteristics, disease
characteristics, and other
variables, demoralization
scores were shown to predict
the spiritual-well-being
score, explaining 12.7% of
the total variance (β = −
0.41, p < 0.001). In other
words, higher demoralization
was associated with lower
spiritual well-being
Bovero et al. 2021 [30] Cross-sectional study/Italy End-of-life oncology patients, To determine the prevalence - Demoralization: Demoraliza- Demoralization (mean ± SD) = Since hope represents a core
with a presumed life expec- of hope in a sample of tion Scale-Italian version 36.25 ± 14.11. The average need and a tool for patients
tancy of 4 months or less and end-of-life patients and (DS-IT) level of spirituality was high. coping with their disease,
a KPS of 50 or lower (KPS to investigate the possible - Spirituality: The Functional However, most patients had it is essential to implement
average score = 38.55 ± relationships between hope Assessment of Chronic clinically relevant anxious stage-specific and realistic
9.93) (n = 350)/hospital and a set of clinical and psy- Illness Therapy – Spiritual and depressive symptoma- hope-facilitating interventions
chosocial measurements Well-Being (FACIT-Sp-12) tology and high levels of and support patients in their
demoralization. Other than search for meaning, which
the pain scale, the total Herth promotes spiritual well-being
Hope Index (HHI) score and seems to be relevant in
significantly correlated with promoting hope
the total scores of all rating
scales and their subscales, as
well as with the measure-
ment of personal religious
practice. The “Meaning”
FACIT-Sp subscale was
found to be the main predic-
tor of hope
Page 7 of 14
259

13
 Table 1  (continued)
259

Authorship Design/country Population (sample)/context Objective Measurements related to spir- Main results Conclusions
ituality and demoralization

13
Ghiggia et al. 2021 [11] Cross-sectional study/Italy End-of-life Italian cancer To investigate the relation- - Demoralization: Demoraliza- Demoralization (mean ± These data underlined how
patients; presumed life ship between personal- tion Scale (DS) SD) = 36.20 ± 14.30. To both the neuroticism trait and
expectancy of 4 months or ity, spirituality, and - Spirituality: The Functional understand the impact of demoralization are correlated
Page 8 of 14

less; KPS average score = demoralization through the Assessment of Chronic Ill- these variables on quality of with a worse health status
39.95 ± 8.88 (n = 210)/ Big Five Inventory (BFI) and ness Therapy–Spiritual Well- life (FACT-G), a hierarchical in terminal cancer patients,
hospital to explore their impact on Being (FACIT-Sp-12) multiple regression was car- whereas spirituality is a protec-
quality of life ried out: in the final model, tive factor
demoralization remained the
strongest contributing factor
(β = − 0.509, p < 0.001),
followed by neuroticism (β =
− 0.175, p < 0.001), spiritu-
ality (β = 0.163, p = 0.015),
and the Karnofsky index (β
= 0.115, p = 0.012)
Chang et al. 2022 [10] Cross-sectional study/Taiwan Taiwanese oral cancer To provide insights into pos- - Demoralization: Demoraliza- Fifty-five (35.5%) patients High demoralization is associ-
inpatients in the Taichung sible connections between tion Scale Mandarin Version were categorized as having ated with low satisfaction with
Veterans General Hospital, demoralization among oral (DS-MV) high demoralization (DS- spiritual needs, poor quality of
Taiwan (n = 155)/hospital cancer patients and its effects - Spirituality: Spiritual Inter- MV scale score > 30), with life, and a high risk of suicidal
on patients’ spiritual ests Related to Illness Tool scores for DS-MV for all ideation. DS-MV may poten-
needs, quality of life, and patients being 27.2 ± 16.8. tially be an effective tool for
suicidal ideation The rates of suicidal ideation achieving holistic health care
were 29.1% (16/55) in the among oral cancer patients
high demoralization group
and 2% (2/100) in the low
demoralization group, with
an odds ratio of 20.10 (95%
CI 4.41–91.55). The logistic
regression analysis found
significant effects of spiritual
needs and global health sta-
tus on demoralization scores
(p < 0.001). Multivariate
analyses confirmed that only
overall quality of life scores
< 62.5 and spiritual need
scores < 3.7 significantly
predicted the onset of high
demoralization
Supportive Care in Cancer
(2023) 31:259
 Table 1  (continued)
Authorship Design/country Population (sample)/context Objective Measurements related to spir- Main results Conclusions
ituality and demoralization

Chang et al. 2022 [31] Cross-sectional study/Taiwan Breast cancer patients To evaluate demoralization and - Demoralization: Demoraliza- Demoralization (mean ± SD) = Demoralization in breast cancer
hospitalized in medical its association with quality tion Scale Mandarin Version 25.12 ± 14.89. High demor- patients is associated with a
care for surgery, chemo- of life, sleep quality, spiritual (DS-MV) alization was associated with reduced quality of life, sleep
therapy, symptom relief, and interests, and suicide risk in - Spirituality: Spiritual Inter- a reduced quality of life, quality, and spiritual interests.
Supportive Care in Cancer

radiotherapy at the Taichung breast cancer inpatients ests Related to Illness Tool sleep quality, and spiritual In the future, demoralization
Veterans General Hospital Chinese Version (C-SpIRIT) interests. Multivariate analy- and its causal or bidirectional
(Taichung, Taiwan) (n = ses found that the scores relationship with quality of
121)/hospital of the European Organization life, sleep quality, and spiritual
for Research and Treatment interests should be established
of Cancer Quality of Life
Questionnaire 62.5 (OR
= 0.21, p = 0.002) and the
(2023) 31:259

Spiritual Interests Related

to Illness Tool Chinese Ver-
sion 3.66 (OR = 0.11, p <
0.001) were associated with
low demoralization. Cancer
patients with both depression
and demoralization had
the worst prognosis. Breast
cancer patients presented
demoralization when they
had unmet bio-psycho-
social-spiritual needs
Bovero et al. 2022 [32] Cross-sectional study/Italy Family caregivers were To evaluate the prevalence of - Demoralization: Demoraliza- The average total demoraliza- The results show that not only
included if they were provid- demoralization in a sample tion Scale (DS) tion score was 29.04 (SD end-of-life patients but also
ing care to a cancer patient in of caregivers of end-of- - Spirituality: distress ther- = 13.62), 19.50% of the family caregivers may experi-
palliative care with a limited life cancer patients and to mometer (DT) caregivers presented mild ence demoralization. This
life expectancy (n = 142)/ investigate the association demoralization, 27.50% pre- demoralization seems to be
hospital between demoralization and sented moderate demoraliza- more closely associated with
different factors, such as tion, and 39.00% presented spiritual and psychological dis-
distress, hope, quality of life, severe demoralization. tress rather than difficulties
and caregiver burden Moreover, an association relating to caregivers’ personal
emerged between demor- time, social roles, physical
alization and emotional (t = states, and financial resources
3.78; p = 0.002) and spiritual
problems (t = 12.43; p =
0.001), assessed through
the DT
Page 9 of 14
259

13
 Table 1  (continued)
259

Authorship Design/country Population (sample)/context Objective Measurements related to spir- Main results Conclusions
ituality and demoralization

13
Lin et al. 2022 [9] Cross-sectional study/China Patients with cancer (n = 874)/ To identify latent classes of - Demoralization: Chinese ver- According to one of the results This study found three
hospital demoralization and examine sion of the Demoralization of their study, as the level of heterogeneous classes of
their associations with Scale-II (DS-II-CV) demoralization increased, demoralization in Chinese
depression and quality of life - Spirituality: McGill Qual- the quality of life in the patients with cancer and
Page 10 of 14

(QOL) among patients with ity of Life Questionnaire existential/spiritual domain indicated that increased
cancer (MQOL): a multidimensional decreased (Class 1—low classes were associated with
questionnaire that measures levels of demoralization: more severe depression and
QOL across four domains existential score = 37.19 ± decreased QOL. Patients with
(physical, psychological, 13.20, Class 2—moderate high levels of demoralization
existential or spiritual, and levels of demoralization: may benefit from positive psy-
social) existential score = 25.17 ± chological interventions (such
13.19, Class 3—high levels as hope therapy), which can
of demoralization: existential be provided with the objective
score = 22.54 ± 11.04) of assisting in increasing
resilience and addressing the
spiritual concerns of people
with cancer, reducing their
sense of hopelessness
Bovero et al. 2023 [16] Cross-sectional study/Italy End-of-life cancer patients (n = To examine the relationship - Demoralization: Demoraliza- The DS-IT showed that 51.8% The results highlight a very high
170)/hospital and hospice between demoralization and tion Scale-Italian Version of cancer patients were prevalence of severe demor-
health-related quality of life (DS-IT) severely demoralized. The alization in end-of life cancer
(HRQoL) in a sample of end- - Spirituality: Functional variables that correlated most patients. Moreover, demorali-
of-life cancer patients with a Assessment of Chronic strongly with demoralization zation was not only associated
life expectancy of 4 months Illness Therapy-Spiritual were psychological variables, with patients’ HRQoL, but it
or less undergoing palliative Well-Being (FACIT-Sp) that is, spiritual well-being was also the most important
care, controlling for soci- (r= − 0.718, p-value < contributing factor
odemographic, clinical, and 0.001) and depression (r =
psychological variables 0.710, p-value < 0.001)

*The data were extracted in order to maintain as much equivalence as possible with the original studies
Supportive Care in Cancer
(2023) 31:259
Supportive Care in Cancer (2023) 31:259 Page 11 of 14 259

provision of palliative care can be presented metaphorically well-being being a protective factor against demoraliza-
as an umbrella to have on hand in case of rain; we propose tion, while unmet spiritual needs are related to increased
that spirituality can be used as an umbrella that protects demoralization in people with cancer. It is worth noting that
patients from the storm caused by demoralization. both the demoralization and spirituality concepts refer to
Still, even among caregivers of people with advanced the lack and the search for meaning/purpose, respectively.
cancer, demoralization seems to be associated, among other Demoralization, a persistent morbid mental state resulting
factors, with spiritual suffering. However, these results from a stressful event, such as an advanced disease, denotes
should be analyzed with caution, considering that the studies a considerable loss of meaning, hope, and purpose [3].
included in this review are all observational studies, which Spirituality, in contrast, is a dynamic and intrinsic aspect of
hinders the establishment of cause and effect relationships. humanity through which people seek meaning, purpose, and
Bovero et al. [29] indicate that people with cancer at the transcendence [17]. Thus, while demoralization implies suf-
end of life may experience higher levels of demoralization fering stemming, among other factors, from the absence of
than people with advanced but not necessarily end-of-life meaning/purpose, spirituality can be a strategy for (re)find-
cancer. Indeed, suffering at the end of life can be quite dis- ing meaning/purpose in life or even in the experience of the
tressing, considering, for instance, the mental suffering that disease. The loss of meaning and purpose precedes a loss of
patients experience at the end of their lives caused by the morale, a struggle to cope, and the potential development of
awareness of their impending death, the knowledge that they despair and demoralization [3]. In this sense, meaning-based
will soon permanently lose everything they consider valu- coping can be an important adaptive pathway for coping
able in life, and that their life will soon be over forever [34]. with stressful situations [38]. There is evidence indicating
As an aggravating factor in this situation, patients usually that religious and spiritual beliefs can influence how patients
have to live with a disease, as in the case of cancer, which cope with the stress and burden of a disease, as well as how
can lead to disability, bodily disfigurement, fear of loss of they adjust to the disease by providing a sense of meaning,
dignity, social isolation, and feelings of greater dependence purpose, and hope [39–41].
on others or the perception of being a burden, which can lead However, Bovero et al. [32] state that not only patients
to the development of the demoralization syndrome—a valid with terminal cancer, but also their caregivers, may experi-
diagnosis for people in the terminal stage [1]. ence demoralization. In caregivers of cancer patients at the
In a systematic review followed by meta-analysis carried end of life, the demoralization syndrome is more closely
out to investigate the prevalence of demoralization and its associated with spiritual and psychological distress than
relationship with sociodemographic and psychological fac- with the overload of activities resulting from the caregiving
tors, advanced cancer was associated with higher levels of task [32]. It seems that caregiver overload may play a more
demoralization [4]. In a mixed-method study on feelings of indirect role regarding demoralization, causing psychologi-
distress in patients with advanced cancer, regression analy- cal and spiritual suffering, from which demoralization can
ses indicated that physical symptoms, psychological distress, emerge [32]. In addition to caregiver burden, Kissane [3]
and existential preoccupation contributed to the prediction of draws attention to the existence of complex interactional
feelings of distress [35]. An et al. [36] proposed that demor- processes between patient and caregiver, including projec-
alization, which encompasses feelings of failure, hopeless- tive identification (a defense mechanism in which the person
ness, and loss of meaning, may reflect a relative failure in the who is the target of the projection begins to behave, think,
tripartite mechanism (sense of meaning of life, self-esteem, and feel according to what has been projected onto them).
and social relationship) of protection against existential Among the studies included in this review, the most com-
distress in terminally ill patients, as proposed by the terror monly used instruments for measuring demoralization and
management theory [37]. The diagnosis of a terminal illness spirituality indicators were the DS [42] and the FACIT-
forces individuals to face the reality of their own mortality, Sp-12, respectively. The DS is a 24-item Likert scale (score
not as an abstract problem for the distant future, but as an 0–96) divided into five subscales, namely, loss of meaning
immediate and urgent concern [37]. The emotional impact and purpose, dysphoria, disheartenment, helplessness, and
of this awareness is typically mitigated by a series of psycho- sense of failure [42]. The scale was developed in popula-
logical defenses that neutralize the potential for terror that tions typical of the contexts of psycho-oncology and pallia-
this knowledge entails [37]. Also, according to this theory, tive care, aiming to create a measurement that could reliably
awareness of the inevitability of death has a profound influ- capture the various dimensions of demoralization, as well
ence on much of what people think, feel, and do and is the as enabling monitoring them over time [42]. The DS has
primary impetus for the human search for meaning, value, been validated in a variety of cultures. In the present study,
and love [37]. the DS was used in its Italian [11, 16, 29, 30, 32], Chinese
Another result of this review indicates that demoralization [9, 15], and Mandarin [10, 31] versions. Our research team
seems to be inversely related to spirituality, with spiritual is currently working on validating the DS for the Brazilian

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259 Page 12 of 14 Supportive Care in Cancer (2023) 31:259

culture. A systematic review that had among its objectives spirituality to address in an effort to bridge both secular and
evaluating the psychometric properties of the DS indicated religious approaches to the healing of the sick.
that the instrument presented psychometric properties evalu-
Supplementary Information The online version contains supplemen-
ated as acceptable to good [43]. Still, researchers indicate tary material available at https://d​ oi.o​ rg/1​ 0.1​ 007/s​ 00520-0​ 23-0​ 7722-6.
the need to further refine the psychometric properties of the
demoralization measurements in order to more clearly deter- Author contributions Ana Cláudia Mesquita Garcia: conceptualization,
mine the best mediums for its assessment [43]. methodology, formal analysis, interpretation, writing the original draft,
writing, reviewing, editing, and supervision. Milena Schneiders and
The Functional Assessment of Chronic Illness Therapy- Karita Santos da Mota: methodology, database searching, and review-
Spiritual Well-Being Scale (FACIT-Sp) has become a widely ing. Vander Monteiro da Conceição: methodology and reviewing.
used measurement tool to assess spiritual well-being in can- David W. Kissane: interpretation, reviewing, and editing.
cer patients [44]. The scale was developed to address the
scarcity of adequately validated and psychometrically sound Declarations
instruments to measure the aspects of spirituality [44]. This Ethics approval Not applicable.
scale has been used worldwide in a range of cultural con-
texts, as, for instance, in Japan [45], Turkey [46], Brazil [47], Consent to participate Not applicable.
and Germany [48]. The FACIT-Sp-12 (https://​www.​facit.​
Consent for publication Not applicable.
org/) is a shortened version of the FACIT-Sp, consisting
of 12 items, divided into three subscales, namely, mean-
Conflict of interest The authors declare no competing interests.
ing, peace, and faith. The answers are stated on a five-point
Likert scale.

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version of the Spiritual Well-Being Scale. Palliat Support Care Publisher’s note Springer Nature remains neutral with regard to
15:684–692 jurisdictional claims in published maps and institutional affiliations.
47. Pereira F, Santos C (2011) Adaptação cultural da Functional
Assessment of Chronic Illness Therapy-Spiritual Well-Being Springer Nature or its licensor (e.g. a society or other partner) holds
(FACIT-Sp): estudo de validação em doentes oncológicos na fase exclusive rights to this article under a publishing agreement with the
final de vida. Cad Saúde 4:37–45 author(s) or other rightsholder(s); author self-archiving of the accepted
48. Damen A, Visser A, Laarhoven HWM et al (2021) Validation of manuscript version of this article is solely governed by the terms of
the FACIT-Sp-12 in a Dutch cohort of patients with advanced such publishing agreement and applicable law.
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pon.​5765

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