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Research Article
Palliative Caregivers’ Spirituality, Views
About Spiritual Care, and Associations With
Spiritual Well-Being: A Mixed Methods Study
Clare O’Callaghan, PhD
1,2,3
,
Davinia Seah, MBBS, BMedSc, MPH, FRACP, FaChPM
4,5
,
Josephine M. Clayton, MBBS, PhD, FRACP, FAChPM
6,7
,
Martina Welz, FRACP, DipPallMed
8
,
David Kissane, AC, MD BS, MPM, FRANZCP, FAChPM, FACLP
1,5,9
,
Ekavi N. Georgousopoulou, MSc, PhD, APD
5
, and
Natasha Michael, MBChB, MRCPI, MRCGP, FRACP, FAChPM, MSc
1,5,10
Abstract
Background: Spiritual care is integral to palliative care. It engenders a sense of purpose, meaning, and connectedness to the
sacred or important and may support caregiver well-being. Aim: To examine caregivers’ spirituality, religiosity, spiritual well-
being, and views on spiritual/religious support. Design: A mixed-methods study across 4 Australian sites, recruiting caregivers of
patients with a life expectancy of under 12 months. The anonymous semistructured questionnaire used included research team
developed and adapted questions examining religion/spirituality’s role and support and views on hospitals supporting spiritual/
religious requirements. It additionally included the Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being Scale
(FACIT-Sp-12). Results: One hundred nine caregivers participated (47.4% responded). Median spiritual well-being was 30.5 on
FACIT-Sp-12. Religious affiliation was associated with higher Faith subscores (P< .001). Spirituality was very important to 24.5%,
religiosity to 28.2%, and unimportant to 31.4% and 35.9%, respectively. Caregivers prayed (P¼.005) and meditated (P¼.006)
more following patients’ diagnoses, gaining comfort, guidance, and strength. Caregivers whose spiritual/religious needs were met
to moderate/full extent by external religious/faith communities (23.8%) reported greater spiritual well-being (P< .001). Hospitals
supported moderate/full caregiver spiritual needs in 19.3%. Pastoral care visits comforted 84.4% of those who received them
(n ¼32) but elicited discomfort in 15.6%. Caregivers also emphasized the importance of humane staff and organizational tone in
supporting spiritual care. Conclusions: Hospital-based spiritual care providers should seek to identify those who seek pastoral
or religiously orientated care. Genuine hospitality of showing concern for the other ensures the varied yet inevitably humanist
requirements of the caregiver community are met.
Keywords
spirituality, religion, palliative care, end-of-life care, family caregivers, pastoral care
1
Palliative and Supportive Care Research Department, Cabrini Health, Melbourne, Victoria, Australia
2
Institute for Ethics and Society, University of Notre Dame Australia, Sydney, New South Wales, Australia
3
Department of Psychosocial Cancer Care and Medicine, St Vincent’s Hospital Melbourne, The University of Melbourne, Victoria, Australia
4
Sacred Heart Health Service, St Vincent’s Hospital Sydney, New South Wales, Australia
5
School of Medicine, University of Notre Dame Australia Sydney, New South Wales, Australia
6
HammondCare, Sydney, New South Wales, Australia
7
Sydney Medical School, University of Sydney, New South Wales, Australia
8
Department of Geriatric Medicine, Cabrini Health, Melbourne, Victoria, Australia
9
Szalmuk Family Psycho-Oncology Research Unit, Cabrini Health, Melbourne, Victoria, Australia
10
Faculty of Medicine, Nursing and Health Sciences, Monash University, Melbourne, Victoria, Australia
Corresponding Author:
Natasha Michael, MBChB, MRCPI, MRCGP, FRACP, FAChPM, MSc, Palliative and Supportive Care Research Department, Cabrini Institute, 154 Wattletree Road,
Malvern, Victoria 3144, Australia.
Email: nmichael@cabrini.com.au
American Journal of Hospice
& Palliative Medicine
®
1-9
ªThe Author(s) 2019
Article reuse guidelines:
sagepub.com/journals-permissions
DOI: 10.1177/1049909119877351
journals.sagepub.com/home/ajh
Introduction
Spirituality refers to the “way individuals seek and express
meaning and purpose and the way they experience their con-
nectedness to the moment, self, others, nature, and to the
significant or sacred.”
1
Individuals may express spirituality
through a commitment to religion and associated prayer,
rituals, beliefs,
2
creative expressions,
3
and meditations.
4
Spiritual care is an essential domain of palliative care,
5
embedded within palliative care definitions and guidelines
6,7
;
however, its implementation has been challenging.
8-10
When
provided, spiritual care addresses existential concerns and
anguish, promotes resilience against stress and loss, brings
hope to despair, and a sense of connection, peace, and mean-
inginsuffering.
11-13
However, research shows that overem-
phasis on spirituality distracts from recognizing that illness
spoils daily routines which typically provide purpose and
security and that the term’s overinclusiveness renders it
unhelpful.
14
Alternatively, exploring what spirituality offers
palliative care is considered important because spirituality is
associated with the uniquely human capacity for contemplat-
ing existence beyond biological and illness limitations.
15
In
parallel to prioritizing research on spiritual care needs of
patients, equal emphasis should be placed on researching the
needs of informal palliative caregivers and the impact of spiri-
tual support on this cohort.
8
Caregivers can experience distress, pain deep in their soul,
struggle with faith,
16-18
and question how a higher being allows
the loved one’s diagnosis, pain, and suffering. They report
wide-ranging concerns, including guilt, isolation, worry, feel-
ing overwhelmed, nonacceptance, anger at God, and relation-
ship changes with patients.
8
Caregiver pain is inversely related
to functional coping and quality of life, positively associated
with depression, and their distress may negatively impact
patients’ experiences.
18,19
Nonetheless, caregiving may also be a time of growth, and 2
North American studies showed adult cancer caregivers had
high spiritual well-being (SWB) as measured by the Functional
Assessment of Chronic Illness Therapy-Spiritual Well-Being
Scale (FACIT-Sp12).
20-22
Caregivers can protect against
adverse effects of caregiving through finding meaning and
maintaining faith and religiosity.
23,24
Those with higher levels
of spirituality who cared for patients with malignant brain
tumors reported less anxiety (P< .01) and depressive symp-
toms (P< .01) than caregivers with lower spirituality levels.
25
Caregivers of patients with cancer who reported greater reli-
giousness were significantly less likely to have a major depres-
sive disorder 13 months post bereavement.
26
Additionally,
“Faith in God” was the second most important influence on
treatment decisions among caregivers of patients with lung
cancer.
27
However, the examination of associations between
religious affiliation and SWB in palliative caregivers is limited.
A study using the SWB subscale of the City of Hope Family
measurefoundnodifference in SWB among religiously
affiliated and unaffiliated caregivers of patients with lung
cancer (P¼.27).
28
Pastoral care can benefit caregivers by providing spiritual
support.
8
Caregivers of patients with cancer demonstrated
improved SWB scores (P¼.0001) following spiritual care
involving counseling, reading, and chanting.
29
Caregivers of
patients receiving end-of-life care in intensive care units were
also more satisfied with care after family members received
religious and spiritual support.
30
However, studies which
included SWB education for caregivers of people with lung
cancer reported mixed findings, with usual care groups show-
ing higher (P¼.049)
28
or lower (P¼.03)
31
SWB as mea-
sured by the City of Hope Scale when compared with
intervention groups. When planning approaches to spiritual
care, it is important to understand recipients’ beliefs and
views. Most research in palliative care has been conducted
in the United States and Western Europe and with people
affiliated with Christianity.
8,32
The aim of this study is to
examine how Australian caregivers’ of patients with advance
disease conceptualize their spirituality, religiosity, and spiri-
tual requirements. The specific objectives are
a. to determine the relationship between caregivers’ SWB
and religious affiliation and spiritual support received,
b. to understand the impact of patient diagnosis on care-
giver spiritual/religious activities, and
c. to examine the views about spiritual and religious care
from hospitals.
Method
A convergent mixed methods design was used which supports
multiple approaches to collect and analyze data aligned with
study aims.
33-35
Quantitative and qualitative data were col-
lected concurrently through an anonymous semistructured
questionnaire and findings were converged. The design sche-
matic is presented in Figure 1. We used closed and open-ended
questions to deeply explore caregivers’ spiritual and religious
experiences and views.
Settings and Sampling
Recruitment occurred from October 2017 to July 2018 using
convenience sampling from 3 tertiary palliative care services
and 1 geriatric service at Melbourne and Sydney, Australia.
Patients with a life expectancy of less than 12 months were
invited to identify an informal caregiver to be approached by
a researcher in person or via telephone. Caregivers who were
willing to consider participation were given further study
details and return-addressed envelopes containing the
questionnaire. Caregivers were aged 18 years old and able
to read/write English. One caregiver per patient was
recruited. Questionnaires were self-completed and comple-
tion implied consent.
2American Journal of Hospice & Palliative Medicine
®
Questionnaire Development
A literature review guided the construction of a patient spiri-
tuality and palliative care questionnaire (study still underway).
It was refined by senior palliative care physicians and research-
ers, piloted with 10 patients, revised further, and subsequently
adapted for caregiver use (Supplementary Material).
The questionnaire included items on caregiver demo-
graphics; patient-related illness; and (1) the validated FACIT-
Sp-12, consisting of 12 items on a 5-point scale which includes
an 8-item Meaning/Peace subscale and 4-item Faith subscale,
respectively, measuring existential and religious well-being,
36
(2) questions adapted from Balboni et al’s questionnaire
37
examining religion/spirituality’s role and support (14 closed
and 4 free text), and (3) questions examining views on hospital
roles in supporting spiritual/religious requirements (7 closed
and 4 free text). Religious/spiritual terms were not defined to
allow individual interpretations.
37,38
Data Analysis
Quantitative summary statistics were presented as mean (stan-
dard deviation) or median [25th to 75th percentile] if normality
was not met. The strength of the association between FACIT-
Sp-12 scores was tested using multivariate linear regression.
Neither adjustment for multiple comparisons nor imputation
for missing values was performed. Two-sided significance
level was set at .05. Analysis used SPSS 25.0
39
on valid data.
Free text responses were analyzed using manifest content anal-
ysis, which presents descriptions of informants’ text rather than
underlying meanings.
34
Data were coded (inductive descriptive
labels), irrelevant information discarded, and then categorized
through a comparative and iterative analytic process with the
support of Atlas/ti software.
40
Validity was increased through
triangulation of qualitative and qualitative data. Quantitative
and qualitative data sets were integrated during data analysis.
Ethical approval was granted by Cabrini Health (07-12-09-16)
and St Vincent’s Hospital Sydney/HammondCare Sydney
(LNR/17/SVH/279).
Results
A total of 271 caregivers were offered questionnaires, with 230
caregivers accepting them. One hundred nine questionnaires
were returned (47.4%response rate). Participant characteristics
are presented in Table 1. Most were middle aged, female, Aus-
tralian born, and 63 (63.6%) of 99 were Christian affiliated.
Table 2 presents total FACIT-Sp-12 and subscale scores by
religious affiliation. Buddhist caregivers had a significantly
higher total SWB score, although their numbers were small.
Individuals affiliated with Christianity, Buddhism, and Juda-
ism had significantly higher Faith subscores compared to
those without religious affiliation (P< .001).The Meaning/
Peace subscore was not associated with religious affiliation
(P¼.585).
Table 1. Caregiver and Corresponding Patient Sociodemographic
Data.
Variables Total N ¼109 (%)
a
Caregivers
Age (SD); range, years 63.7 (13.0); 30-93
Sex (female) 80 (73.4%)
Relationship
Married/defacto/same sex 92 (84.4%)
Widowed 2 (1.8%)
Single 10 (9.2%)
Divorced, separated 5 (4.6%)
Country of birth
Australia 80 (73.4%)
United Kingdom 7 (6.4%)
Other 22 (20.2%)
Employment
Full-time employment 24 (22.4%)
Retired 46 (43.0%)
Self-employed, part time, casual 12 (11.2%)
Home duties 4 (3.7%)
Unable to work 14 (13.0%)
Other 7 (6.5%)
Age of patient (SD); range, years 76.9 (12.5); 46-102
Sex of patient (female) 54 (49.5%)
Patient diagnosis
Malignant 80 (74.1%)
Nonmalignant 28 (25.9%)
Length of patient’s main illness
<6 months 26 (24.5%)
6-12 months 13 (12.3%)
1-5 years 41 (38.7%)
5 years 26 (24.5%)
Abbreviation: SD, standard deviation.
a
All percentages are for observations recorded.
Completed Questionnaires
Caregiver demographics and patient details
FACIT-SP-12
Role of religion/spirituality and supports
Role of hospitals in supporting spiritual/religious requirements
Qualitative analysis
Manifest content analysis
Quantitative analysis
Descriptive statistics
Answers to closed questions Answers to free text questions
Coverage findings
Discussion / Interpretation
Figure 1. Convergent mixed-methods design schematic.
O’Callaghan et al 3
Importance of Spirituality/Religion
Table 3 illustrates caregivers’ views on the importance of spiri-
tuality and religion in their lives. Approximately one quarter
selected spirituality and religion as very important, with one-
third rating these as unimportant. A total of 21 (21.1%)of99
caregivers were both highly spiritual and religious and 23
(22.9%) of 99 stated that neither was important.
Associations Between SWB and Participant
Characteristics
When adjusted for age, gender, illness of patient being cared
for, diagnosis length, and religious affiliation, total FACIT-
Sp12 scores were 4.3 (95%confidence interval [CI]: 1.9-6.9,
P< .001) and 4.3 (95%CI: 2.0-6.6, P< .001) higher in those
where the roles of spirituality and religiosity, respectively,
were perceived as important. Faith subscores showed almost
identical mean rises when the roles of spirituality and religios-
ity were perceived as important while there was no association
found between either role or the meaning subscores. Due to the
high correlation between roles, modeling was performed
separately for each and both models explained only 4%of the
variance after adjustments.
Spiritual/Religious Activities
Following patients’ diagnoses, 38 (36.5%) of 104 prayed once
a week or more compared to 31 (29.8%) of 104 beforehand
(P¼.005). Similarly, 36 (35.0%) of 103 meditated once a
week or more compared to 28 (27.5%) of 102 beforehand
(P¼.006). Prayer and meditation were a source of comfort,
nurturance, guidance, and strength. Caregiver 79 wrote that
they helped with “Sadness, depressed thoughts, inability to
cope, overwhelming grief, stress, and hopelessness.” Some
reported changes in the focus of prayers or meditations, includ-
ing praying more for loved ones or reflecting more on existen-
tial issues. Caregiver 33 focused on “the reasons for suffering.”
Seven wrote that spiritual/religious activities helped them to
cope with the patients’ illnesses, but 10 explained that they
attended fewer religious services because of time issues,
patient needs, or wanting to remain with patients.
Table 2. FACIT SP-12 Total and Meaning/Peace and Faith Subscores by Religious Affiliations.
Religious Affiliation N
a
Total, Mean (SD) PValue Meaning/Peace, Mean (SD) PValue Faith, Mean (SD) PValue
Overall 99 30.5 (8.4) .026 22.8 (5.44) .585 8.0 (4.5) .001
None 24 26.5 (8.9) 22.2 (5.4) 4.9 (3.5)
Christian 63 30.7 (8.1) 22.6 (5.3) 8.2 (4.6)
b
Buddhism
c
3 39 (5.3)
b
26.7 (4.5) 12.3 (1.5)
b
Judaism 9 34.3 (6.0) 23.4 (4.0) 10.9 (2.2)
b
a
Ten missing.
b
Post hoc analysis indicated a significant difference compared with none.
c
Two also indicated Christian.
Table 3. Caregivers’ Views About the Importance of Spirituality and Religion in Their Lives, With Illustrative Quotes.
Role
Spirituality,
n (%)
a
Illustration: Spirituality’s Role
Religion,
n (%)
b
Illustration: Religion’s Role
Very important 25/102 (24.5) To me it means having a sense of
connectedness with nature and appreciation
of the beauty of nature, the sunrise, sunset,
full moon and taking the time to draw breath
and appreciate this beauty is important. I
have a special place to go and sit for a few
minutes during this present illness. (#17)
29/103 (28.2) At least a starting point for a moral map. A fall
back for moments of despair or existential
crisis. The only thing we have, outside
science, that at least attempts to explain life
and death. (#33)
Somewhat
important
45/102 (44.1) I don’t believe in any organised religions or
doctrines and their belief system, however, I
am strongly aware of the need to
understand the meaning of life and am
curious about how life started ...the
concept of “being” or “is” simply too
complex to grasp. (#25)
37/103 (35.9) One’s faith provides a framework for
understanding, coping with difficulties and
for inspiration in life. (eg, Knowing how
others—saints—lived their lives). (#13)
Not important 32/102 (31.4) I don’t believe in a spirit that goes on after
death. I believe in my own values. I focus on
my values and beliefs and mental health, in
being a better person. (#39)
37/103 (35.9) It has no meaning for me personally. (#109)
a
Seven (6.4%) missing.
b
Six (5.5%) missing.
4American Journal of Hospice & Palliative Medicine
®
Spiritual and Religious Support
Religious/faith communities outside of hospitals were meeting
spiritual and religious needs to a moderate or full extent for
23.8%(Table 4). These caregivers reported greater SWB than
those whose needs were not met by these communities (total
SWB 36.5 [5.2] vs total SWB 28.2 [8.4]; P< .001]. Another
19.3%and 13.7%had moderate or full spiritual and religious
needs met by the hospitals, respectively, with no significant
difference in SWB compared with those whose needs were not
met by the hospitals. Almost half of the caregivers felt that the
hospitals’ pastoral support was irrelevant as they had no spiri-
tual or religious requirements.
Pastoral care visits in the hospitals were offered to 44
(42.3%) of 104 and received by 32 (30.8%) of 104. Visits were
comforting and calming for 27 (84.4%) of 32 caregivers,
including those not religiously affiliated. Support included
meditation instruction, shared prayer, and encouragement in
faith, comforting presence, advice, and provision of sacra-
ments. Additionally, 5 (15.6%) of 32 caregivers reported that
pastoral care visits elicited discomfort, including when they
were unexpected:
The chemo was unsuccessful and I felt like it was because the
pastoral care knew this ...I was unprepared for the conversation
as I thought it was like ‘Last rites.’ (Caregiver 41)
Views About Spiritual and Religious Care From Hospitals
A total of 83 (80.5%) of 103 agreed that hospitals should sup-
port caregivers’ spiritual needs if required but not necessarily
for themselves. Following explanations were provided:
Stressed caregivers need support for strength and comfort.
Caregivers’ reasoned that many needed spiritual support
because of their stress and vulnerability but only required if
religion and/or spirituality were considered important:
People (carers) need to be well supported in their belief system
while caring for a seriously ill loved one as your beliefs are being
seriously questioned while watching someone you love suffer. A
carer needs to maintain a strong head and inner strength both for
themselves and the person they are caring for. (Caregiver 15)
I gain no solace from religion/spirituality but very many do (and
that belief will be vital in sustaining them and the patient) and their
families through a very difficult time. Supporting the individuals’
needs (and belief is a need for the purposes of this discussion) is
paramount. (Caregiver 54)
Many explained reasons for caregivers’ described distress.
For example,
Being confronted with death, sickness and suffering certainly
causes one to reflect and begin to ask never before asked questions.
(Caregiver 33)
Only 4 (3.8%) of 103 did not believe that hospitals should
support caregivers’ spiritual needs. Caregiver 10 explained:
Support given by family and friends is sufficient. I do not see it as a
function of hospital care.
Spiritual care involves human and material elements
beyond standard care. Ensuring compassionate care of patients
Table 4. Extent Participants’ Spiritual/Religious Needs Met by Religious Communities and Hospitals.
Extent Religious/Spiritual Needs Supported by Religious and/or Faith Community Away From Hospital
Total (N ¼109),
n (%)
Consolidated
Percentage
Missing data 6 (5.5%)
Do not have religious/spiritual requirements 28 (25.7%) 31.2%
Not at all 35 (32.1%) 32.1%
To a small extent 14 (12.9%)
To a moderate/large extent 20 (18.3%)
Completely 6 (5.5%) 36.7%
Extent spiritual requirements supported by hospital
Missing data 15 (13.8%)
Do not have spiritual requirements 44 (40.3%) 54.1%
Not at all 19 (17.4%) 17.4%
To a small extent 10 (9.2%)
To a moderate/large extent 14 (12.9%)
Completely supported 7 (6.4%) 28.5%
Extent religious requirements supported by hospital
Missing data 14 (12.9%)
Do not have religious requirements 49 (45.0%) 57.9%
Not at all 21 (19.3%) 19.3%
To a small extent 10 (9.2%)
To a moderate/large extent 8 (7.3%)
Completely supported 7 (6.4%) 22.9%
O’Callaghan et al 5
was described as one way of addressing caregivers’ spiritual
needs. One caregiver was “privileged” to observe:
Aseniornurse...fully acknowledged my wife’s difficulty and
stayed with her until the condition had passed. She showed a level
of love and grace that transcended the purely technical and medical
qualities of nursing. (Caregiver 7)
Others indicated the need for contemplative spaces for
reflection/meditation:
Having a chapel/quiet space is important. (Caregiver 41)
Some sought privacy:
One time as a family we all became overwhelmed and upset.
(Name) found a room for us to be in and helped a lot. (Care-
giver 16)
Some caregivers additionally sought sacraments, faith-
based counselors, advertisements about available religious ser-
vices, a crucifix and a bible in patient’s rooms, and/or people to
talk to, including about the patient’s diagnosis. One wanted:
Help to prepare dad for the end. (Caregiver 87)
Another asked that staff:
Listen to what is being expressed by someone grieving and benefit
(sic) who finds it hard to be rational about losing half their life in
the beloved. Explain how to cope with a patient who wants to
mentally [do] what they are physically unable to do—it is the most
distressing thing I’ve had to face. (Caregiver 79)
Discussion
This study provides valuable insights into Australian palliative
caregivers’ spirituality, religiosity, views about spiritual care,
and SWB. To contextualize the findings, our participants
demonstrated some diversity found in international popula-
tions
41
and were more heterogeneous than in comparable care-
giver studies, which had almost all Christian or religious
participants.
18,42
Our nonreligiously affiliated cohort (24.2%)
was lower than the general Australian (32%)
43
population but
similar to England and Wales (25.1%)
44
and North America
(22.8%).
45
Reflecting attendees at study sites, the Christian
cohort (63.6%) was higher than general Australian (45%)
43
and
English/Welsh (59.3%)
44
populations, but lower than in North
America (70.6%).
45
Further, 22.9%wrote that both spirituality
and religion were not important in our study compared with
53%in Western Europe.
41
In North America, 24%identify as
not a spiritual person and 25%state that religion is not impor-
tant.
46
Finally, 35.9%of our caregivers stated that religion was
not important yet only 24.2%reported no religious affiliation,
suggesting that some with religious affiliations consider that
religion had no real role in their lives.
The importance of spirituality and religion was considerably
lower for our caregivers when compared with those in North
American
18
and other Australian
42
research, where virtually
all used spirituality and/or religion to support their caregiving.
When compared with previous Australian research,
42
our
findings reflect the country’s growing secularization
42
and
the study’s inclusion of participants from more diverse,
including nonreligiously affiliated backgrounds. Our care-
givers’ total mean SWB score was 3.9 to 5.2 points lower
than North American cancer caregivers in 2 studies.
19-21
Both
these studies only provided total SWB scores and no informa-
tion on participants’ religious affiliations. We speculate that,
if our cohort had a higher proportion of nonreligious partici-
pants, this may explain the differences. In our study, we found
that participants who were religiously affiliated (Christian,
Buddhism, Judaism) had higher Faith subscores compared
to those with no religious affiliation.
Over two-thirds of caregivers reported spirituality and reli-
gion independently as being very or somewhat important in
their lives, and one-third prayed and/or meditated about their
relative’s illness. Eighty percent of caregivers agreed that hos-
pitals should support caregiver’s spiritual needs, yet only about
one quarter were receiving help from the hospital, and close to
half reported that such support was personally irrelevant.
Indeed, just over a third were supported by religious or faith
communities outside of the hospital. These findings have orga-
nizational implications as the study was conducted in hospitals
with strong Christian traditions. Pastoral services provide over-
sight on the delivery of spiritual care. However, the focus con-
tinues to remain on the provision of spiritual care to the patient
and not the caregiver.
Our findings have a number of implications. Firstly, because
around one quarter of caregivers are not religiously aligned, it
seems worthwhile for palliative care services to directly ask
patients and their caregivers whether they seek help from gen-
eral pastoral care services or religiously orientated chaplaincy.
Only by asking can health providers avoid harm evident for
caregivers who experienced discomfort speaking with pastoral
care and upsetting those who believe that hospitals should
refrain from spiritual/religious care. Conversely, many partici-
pants sought religious support from local communities, appre-
ciating continuity obviously gained from longer term
connections. By directly asking at admission or another suit-
able time whether pastoral care involvement is sought, we can
avoid unnecessary intrusion and focus time on those who
would benefit and appreciate this service.
Secondly, while caregivers appreciated the availability of
expert spiritual care if needed, they also highly valued com-
passionate care from all staff, which supported both their
direct, humanist, personal needs, and their need to observe
good patient care. They valued supportive ward environments,
including quiet, reflective spaces, and family areas. The impor-
tance of human connection has been described as a prerequisite
to effective spiritual care.
8
We suggest that, alongside the
emphasis on spirituality in palliative care, the old concept of
“hospitality” also needs highlighting in order to meet the varied
6American Journal of Hospice & Palliative Medicine
®
yet inevitably humanist requirements of the pluralist palliative
caregiver community. Hospitality, which is linked to palliative
care through medieval hospice shelters for weary travelers, is
friendly, kind, and concerned about another’s comfort and
appeal for understanding.
47-49
To provide hospitality, one
might go beyond what is generally expected, “communicate
something of oneself,” and convey an availability and openness
to each person’s unique individuality and “mystery” rather than
“problem” to be solved.
49,50
Hospitality supports holistic well-
being and creates a welcoming human, organizational, and
environmental context for individual and shared flourishment.
Specialist spiritual care providers (chaplains, pastoral practi-
tioners, and pastoral carers) are well placed to offer hospitality,
but conceptualizing hospitality as a subset of formal spiritual
care may reinforce criticism related to spirituality’s
“overinclusive” meaning.
51
The concept of hospitality as an
adjunct to spiritual care mitigates this criticism and is arguably
a more inclusive and relatable and concept in clinical settings.
Study Limitations
Study limitations included the 47.4%response rate, missing
data in questionnaire responses, and that findings only reflected
views of literate, English-speaking, voluntary participants. Par-
ticipants were also only recruited from 4 sites within 3 hospi-
tals with Christian orientations across 2 Australian cities.
Methodological limitations include allowing individual inter-
pretations of religious/spiritual terms. In addition, the term
“spiritual/religious requirements” is used in the questionnaire
(as per National Palliative Care Strategy),
7
while the term
“spiritual/religious needs” is used in the body of the paper.
This may contribute to the subjective interpretation of these
terms and overall findings. Hence, probabilistic generaliza-
tions from the convenience study sample cannot be made;
however, “logical generalizations”
52
can be made to palliative
caregivers with comparable backgrounds elsewhere.
Conclusion
The study extends insight into palliative caregivers’ spiritual
and religious backgrounds, views about spiritual care, and
SWB. Religiously orientated support is appropriate for those
with a religious association, and overall, pastoral care provided
comfort to the majority who received it. Hospitality, an early
Christian tradition and a basic principle of human interaction,
provides a framework for resolving diversity, cutting across
cultures and religions, ensuring a sacred commitment to the
stranger. Hospitality provides a transformational ethic
53
along-
side spirituality to respectfully articulate care for caregivers’
pluralist yet humanistic needs and may inspire worthy direc-
tions for palliative care services and research.
Acknowledgments
The authors thank the caregivers of palliative care patients who parti-
cipated in this study and staff from participating hospitals who sup-
ported recruitment.
Declaration of Conflicting Interests
The authors declare 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: The research
was funded by the Cabrini Foundation Sambor Family Clinical
Research Grant and the Palliative Care Research Network (Victoria,
Australia) Small Project Grant.
ORCID iD
Clare O’Callaghan https://orcid.org/0000-0002-3180-2781
Natasha Michael https://orcid.org/0000-0003-3603-1258
Supplemental Material
Supplemental material for this article is available online.
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