Content uploaded by Enric Benito
Author content
All content in this area was uploaded by Enric Benito on Dec 12, 2017
Content may be subject to copyright.
Copyright © 2015 Wolters Kluwer Health, Inc. All rights reserved.
C
URRENT
O
PINION
Evaluation tools for spiritual support in end of life
care: increasing evidence for their clinical
application
Amparo Oliver
a
, Laura Galiana
a
, and Enric Benito
b
Purpose of review
To summarize current evidence on evaluation tools for spiritual care, paying special attention to recent
validations and new instruments, systematic reviews, recent consensus on spiritual care and its
measurement, plus other emergent topics.
Recent findings
The systematic review resulted in 45 identified studies, 14 of which were considered: five works addressed
the need for development and validation of spiritual tools; three studies reviewed tools for spirituality
assessment, interventions, or related concepts; three more covered the efforts to define guidelines and
priorities for spiritual care and its measurement. Other topics such as pediatric spiritual care, the use of
new technologies, or nationwide surveys, also arose.
Summary
Recent contributions outline usability traits such as to shorten scales and measurement protocols for
maximum respect of patients’ quality of life. Other works addressed complicated grief or satisfaction with
attention to spiritual care, transcending the patients, family and professionals’ focus in on a sort of
combined perspective. Further attention to culturally based specific models supporting questionnaires, a
deeper understanding of quality of the spiritual care, both for patients and families, or further research on
the relation between spiritual care and life span should be welcomed.
Keywords
research priorities, spiritual measurement instruments, systematic review
INTRODUCTION AND PURPOSE OF
REVIEW
To date, spirituality has been recognized by
researchers, clinicians, and patients as an important
resource for addressing distress when facing death
[1–2]. Consequently, in the palliative care context,
the assessment of spiritual needs and resources are
both imperative for whole person care, and several
efforts on its evaluation have been implemented
[3
&&
].
The new interest in spiritual care has led to the
development of a pleiad of instruments for its assess-
ment. Nowadays, it is usual to hear about new
spiritual scales, new applications to different popu-
lations, and new approaches to spirituality. The aim
of this work is to summarize current evidence on
these evaluation tools for spiritual care, paying
special attention to recent validations and new
instruments, systematic reviews, recent consensus
on spiritual care and its measurement, and other
emerging topics.
LITERATURE REVIEW
To review the latest results identified in palliative
care literature, a systematic review was carried out
following Preferred Reporting Items for Systematic
Reviews and Meta-Analyses guidelines [4]. The review
was conducted in different stages. First, several
criteria were used for the databases search. Second,
those works tapping the spiritual assessment topic
were selected, using this combined criterion: articles
should be centered on spiritual care or spirituality
measurement, or at least include a reflection on
these topics; and to be focused on palliative care
a
Department of Methodology for the Behavioral Sciences, University of
Valencia, Valencia and
b
Balearic Islands Palliative Care Regional
Program, Palma de Mallorca, Spain
Correspondence to Amparo Oliver, Department of Methodology for the
Behavioral Sciences, University of Valencia. Av. Blasco Iban
˜ez, 21,
46010, Valencia, Spain. E-mail: oliver@uv.es
Curr Opin Support Palliat Care 2015, 9:357– 360
DOI:10.1097/SPC.0000000000000173
1751-4258 Copyright ß2015 Wolters Kluwer Health, Inc. All rights reserved. www.supportiveandpalliativecare.com
REVIEW
Copyright © 2015 Wolters Kluwer Health, Inc. All rights reserved.
populations. A few additional key contributions
from experts were added to the search results.
Finally, main ideas were gathered and were briefly
presented in these pages.
Twenty-two databases included in the ProQuest
Central were searched. To locate additional articles,
the Google Internet search engine was used to
identify other relevant works. The strategy used
included three groups of terms combined with
AND: ‘spiritual’ and ‘palliative care’ (including
‘end of life’) and ‘outcome’ (including ‘measure’).
The search was limited to those works published in
2014 and 2015. Once authors’ agreement on key
characteristics of the studies was reached, those
considered relevant for this article were picked up.
RESULTS FROM THE LITERATURE REVIEW
The search resulted in 45 identified studies, 13 of
which were duplicated and two were not found.
From the 30 examined studies, half of them anec-
dotally treated spirituality measurement and five
were not carried out in palliative populations. After
including additional four key contributions, a total
of 14 publications was analyzed. A summary of the
review process can be seen in Fig. 1.
RECENT FINDINGS
Recent validations and new instruments
Five works addressed the need of development and
validation of spiritual tools. Cui et al. [5
&
] for
instance, explored the use of a version of the McGill
Quality of Life Questionnaire (MQOL) [6], in
patients with advanced cancer on the Chinese main-
land. Lucette et al. [7
&
] explored the French version
of the provisional European Organisation for
Research and Treatment of Cancer measure of spi-
ritual well being, and the potential problems related
to its content and administration. Harding et al. [8
&
]
also adapted the well known Palliative Outcome
Scale (POS) for the African context: the African
Palliative Care Association POS, reporting its use
for the assessment of spiritual dimensions, among
others.
Of special interest are three works, developing
new spirituality measurement instruments. Benito
et al. [3
&&
] developed an eight-item instrument
for spiritual assessment in Spanish palliative care
population. Confirmatory factor techniques,
together with the assessment of clinicians’ percep-
tions on its use, should be highlighted. Burke and
Neimeyer’s work [9
&&
], in turn, is focused on the
spiritual care of grievers, with the development of
the Inventory of Complicated Spiritual Grief.
We should bear in mind that palliative care includes
not only patients, but also their families and care-
givers, although measurement instruments in
this arena are scarce. Finally, Daaleman et al.
[10
&&
] has focused, within a pioneering approach,
on the development of an instrument for
assessing the quality of the spiritual care received
by patients and families. Again, the importance of
families’ perceptions takes on a higher relevance,
accompanied with a change of perspective, from
patients and family resources and needs, to the
quality of the care they have received to address
these needs.
Reviews
Guo and Jacelon [11
&
] undertook a review on
dignity-related issues at the end of life. Although
not directly centered on spirituality measurement,
a closer look to this compilation makes it clear
that there is still a constellation of interweaved
concepts. Further research on these topics and its
relation is needed to disentangle communalities
and differences. Galiana et al. [12
&&
]reviewed57
tools for spiritual assessment to distinguish those
validated in the Spanish context. Of importance
seems the prevalence of instrument usage without
validation or adaptation to the different countries.
Keall et al. [13
&&
] reviewed quantitative evaluations
of therapeutic life review interventions in palliative
care patients. Reading this paper, it could be con-
cluded that the assessment of spiritual outcomes
after the interventions is a constant. The Functional
Assessment of Chronic Illness Therapy – Spiritual
Well-Being Scale [14] and the MQOL [6] are the
most widely used, at least in this type of inter-
vention.
KEY POINTS
A review on latest papers on spiritual tools for palliative
care has shown 14 important works published during
2014–2015.
Authors ask for shorter scales, with usability, to respect
patients’ quality of life.
Spiritual attention to families and caregivers, together
with the assessment of the quality of this attention, is
gaining importance.
Culturally based specific models of spirituality and
spiritual assessment are also developed.
The relation between spiritual care and life span,
specifically pediatric care, is assessed.
End of life management
358 www.supportiveandpalliativecare.com Volume 9 Number 4 December 2015
Copyright © 2015 Wolters Kluwer Health, Inc. All rights reserved.
Recent consensus on spiritual care and
spirituality measurement
Three relevant papers have been published during
the period of review. An outstanding contribution is
the one developed by Puchalski et al. [15
&&
] that
covers the efforts of worldwide researchers on
spiritual care and spirituality measurement, using
qualitative methodology. The first of their recom-
mendations for research development is to ‘build
research capacity and infrastructure ... by providing
training on research tools and methods’ (p. 646).
Nowadays, the focus is not only in the development
of new instruments, successfully attending their
psychometric properties, but in finding the way to
broadcast these to the bedside clinicians that
actually provide the spiritual care. In this same
way, Selman et al. [16
&&
] tried to determine research
priorities, but this time by a cross-sectional mixed-
methods survey. Conclusions were pretty much the
same, this time claiming in the first place the evalu-
ation of screening tools for spiritual needs. Finally,
Auon and Nekolaichuk’s [17
&
] work reviews research
needs of the general context of palliative care. The
difficulty in standardizing complex interventions,
particularly psychosocial spiritual interventions, is
pointed out. Further, useful advice on recording
clinical outcomes using standard measures, or the
development of minimum data set, are given.
Other emergent topics
A little tackled issue is the one presented by Petersen
[18
&&
]: the spiritual care of children at the end of life.
As the author states in her review, we should assess
children’s spiritual needs, to conduct the appropri-
ate interventions and offer a whole person care; it is
time to reconsider what we can do for them and
their families and why research is still scarce in
this arena.
In the work of Currow et al. [19
&
] spiritual tools
are not a central point, but is the first time that
outcomes of spiritual care, together with several
variables, have been measured nationwide. It is
worth to note the effort of these authors and the
need to extend this kind of population assessments.
Finally, we bring a bit of the use of new tech-
nologies. Stukenborg et al. [20
&
] tells us about the
potential of tablet computers to collect patients’
spiritual values. Any help is welcome in the pallia-
tive care research arena where easy and straight
methods for gathering, codifying, and processing
self-report data could encourage bedside researchers
to improve their tasks.
DISCUSSION AND CONCLUSION
Summarizing current scientific production on
instruments for spiritual support in the end of life,
Number of papers identified
n = 45
Number of papers with paper and
abstract reviewed
n = 30
Duplicated results (n = 13)
Manuscripts not found (n = 2)
Total works identified for review
n = 15
Excluded by type (n = 20):
Papers not centered on spirituality
(n = 15)
Excluded population (n = 4)
Included by expert
recommendations (n = 4)
Recent validations and new
instruments (n = 6) Reviews (n = 3)
Recent consensus on
spiritual care and spirituality
measurement (n = 3)
Other topics (n = 3)
FIGURE 1. Flow diagram for manuscript selection and evaluation for the review (following Preferred Reporting Items for
Systematic Reviews and Meta-Analyses).
Evaluation tools for spiritual support Oliver et al.
1751-4258 Copyright ß2015 Wolters Kluwer Health, Inc. All rights reserved. www.supportiveandpalliativecare.com 359
Copyright © 2015 Wolters Kluwer Health, Inc. All rights reserved.
a few milestones for addressing further research
arose.
When approaching recent spirituality, measure-
ment literature, as clearly shown, is still needed to
continue efforts in standardization, reliability, and
validity improvements [3
&&
,10
&&
,12
&&
] from a wider
perspective.
Recent contributions outline usability traits such
as to shorten scales and measurement protocols for
maximum respect of patient quality of life [17
&
] but
also technological aids and devices to apply these
measurement procedures [20
&
]. Although some
recent papers address this topic [3
&&
,7
&
,8
&
,19
&
], further
work could be published attending to culturally
based specific models supporting scales and question-
naires
The wider perspective in spirituality evaluation
tools includes new issues such as complicated grief
or satisfaction with attention to spiritual care, trans-
cending the patients, family and professionals’ focus
in a sort of combined perspective.
Finally, through current study, when updating
and compiling spirituality measures for research,
we realized that more efforts in considering the life
span perspective in spirituality measurement are
needed. Except for the interesting contribution
from Petersen [18
&&
] through pediatric settings,
research from the age perspective is missed. Future
questionnaire development should benefit from
considering spirituality from both end-of-life and
life-span-cycle approaches.
Acknowledgements
None.
Financial support and funding
None.
Conflicts of interest
There are no conflicts of interest.
REFERENCES AND RECOMMENDED
READING
Papers of particular interest, published within the annual period of review, have
been highlighted as:
&of special interest
&& of outstanding interest
1. Selman L, Harding R, Gysels M, et al. The measurement of spirituality in
palliative care and the content of tools validated cross-culturally: a systematic
review. J Pain Symptom Manage 2011; 41:728 –753.
2. Vachon M, Fillion L, Achille M. A conceptual analysis of spirituality at the end of
life. J Palliat Med 2009; 12:53–59.
3.
&&
Benito E, Oliver A, Galiana L, et al. Development and validation of a new tool
for the assessment and spiritual care of palliative care patients. J Pain
Symptom Manage 2014; 47:1008–1018.
Development of an eight-item instrument for spiritual assessment in a Spanish
palliative care population, with confirmatory factor techniques and assessment of
clinicians’ perceptions on its utility.
4. Moher D, Liberati A, Tetzlaff J, et al. Preferred reporting items for systematic
reviews and meta-analyses: the PRISMA statement. Ann Intern Med 2009;
151:264– 269.
5.
&
Cui J, Fang F, Shen F, et al. Quality of life in patients with advanced cancer at
the end of life as measured by the Mc Gill quality of life questionnaire: A survey
in China. J Pain Symptom Manage 2014; 48:893 –902.
The work explores the use of a version of the MQOL in patients with advanced
cancer in China.
6. Cohen SR, Mount BM, Strobel MG, Bui F. The McGill Quality of Life
Questionnaire: a measure of quality of life appropriate for people with
advanced disease. A preliminary study of validity and acceptability. Palliat
Med 1995; 9:207– 219.
7.
&
Lucette A, Bre
´dart A, Vivat B, Young T. Pilot-testing the French version of a
provisional European organisation for research and treatment of cancer
(EORTC) measure of spiritual well-being for people receiving palliative care
for cancer. Eur J Cancer Care (Engl) 2014; 23:221 –227.
Translation and study of the French version of the provisional European
Organisation for Research and Treatment of Cancer measure of spiritual well
being.
8.
&
Harding R, Powell RA, Namisango E, et al. Palliative care-related self-report
problems among cancer patients in East Africa: a two-country study. Support
Care Cancer 2014; 22:3185–3192.
Adaptation of the POS for the African context.
9.
&&
Burke LA, Neimeyer RA. Spiritual distress in bereavement: evolution of a
research program. Religions 2014; 5:1087–1115.
Development of an instrument for the assessment of spiritual care for grievers.
10.
&&
Daaleman TP, Reed D, Cohen LW, Zimmerman S. Development and pre-
liminary testing of the quality of spiritual care scale. J Pain Symptom Manage
2014; 47:793– 800.
Development of an instrument for assessing the quality of the spiritual care
received by patients and families.
11.
&
Guo Q, Jacelon CS. An integrative review of dignity in end-of-life care. Palliat
Med 2014; 28:931– 940.
Review on dignity-related issues at the end of life.
12.
&&
Galiana L, Oliver A, Gomis C, et al. Cuestionarios de evaluacio
´n e intervencio
´n
espiritual en cuidados paliativos: una revisio
´n crı
´tica. [Spirituality assessment
and intervention questionnaires in palliative care: a critical review]. Med Pal
2014; 21:62– 74.
Review of tools for spiritual assessment to distinguish those validated in the
Spanish context.
13.
&&
Keall RM, Clayton JM, Butow PN. Therapeutic life review in palliative care: a
systematic review of quantitative evaluations. J Pain Symptom Manage 2015;
49:747– 761.
Review of quantitative evaluations of therapeutic life review interventions
in palliative care patients, with Functional Assessment of Chronic Illness
Therapy – Spiritual Well-Being Scale and MQOL being the most widely used
tools.
14. Peterman AH, Fitchett G, Brady MJ, Hernandez L, Cella D. Measuring spiritual
well-being in people with cancer: the Functional Assessment of Chronic
Illness Therapy– Spiritual Well-being Scale (FACIT-Sp). Ann Behav Med
2002; 24:49– 58.
15.
&&
Puchalski CM, Vitillo R, Hull SK, Reller N. Improving the spiritual dimension of
whole person care: reaching national and international consensus. J Palliat
Med 2014; 17:642– 656.
Discussion groups researchers’ conclusions on spiritual care and spirituality
measurement, with emphasis on providing training on research tools and meth-
ods.
16.
&&
Selman L, Young T, Vermandere M, et al. Research priorities in spiritual care:
an international survey of palliative care researchers and clinicians. J Pain
Symptom Manage 2014; 48:518–531.
Study on professionals’ perceptions for research on palliative care, with emphasis
on trying to determine research priorities, but this time by a cross-sectional
evaluation of screening tools of spiritual needs.
17.
&
Aoun SM, Nekolaichuk C. Improving the evidence base in palliative care to
inform practice and policy: thinking outside the box. J Pain Symptom Manage
2014; 48:1222– 1235.
Review of research needs in palliative care, pointing out the difficulty for standar-
dizing spiritual interventions and the need for using standard measures and the
development of minimum data sets.
18.
&&
Petersen CL. Spiritual care of the child with cancer at the end of life: a concept
analysis. J Adv Nurs 2014; 70:1243–1253.
Review on the spiritual care of children at the end of life, posing the need for
assessing these needs to offer whole person care.
19.
&
Currow DC, Allingham S, Yates P, et al. Improving national hospice/palliative
care service symptom outcomes systematically through point-of-care data
collection, structured feedback and benchmarking. Support Care Cancer
2015; 23:307– 315.
Study on nationwide evaluation of outcomes of spiritual care.
20.
&
Stukenborg GJ, Blackhall L, Harrison J, et al. Cancer patient-reported out-
comes assessment using wireless touch screen tablet computers. Qual Life
Res 2014; 23:1603– 1607.
Study on the use of tablet computers to collect patients’ spiritual values.
End of life management
360 www.supportiveandpalliativecare.com Volume 9 Number 4 December 2015