ArticlePDF Available

Evaluation tools for spiritual support in end of life care: Increasing evidence for their clinical application

Authors:

Abstract and Figures

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.
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
[12]. 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
... Actualmente, es frecuente la publicación de nuevos cuestionarios de evaluación y acompañamiento espiritual, aplicados en distintas poblaciones y nuevas aproximaciones a la espiritualidad. De hecho, en una revisión de los trabajos llevados a cabo durante el año 2014, se identificaron 6 estudios dirigidos a estudiar las propiedades psicométricas de nuevas y ya conocidas escalas de medida de la espiritualidad, 3 revisiones sobre la medida de la espiritualidad o aspectos relacionados, 3 trabajos cuyo objetivo fue consensuar la definición del cuidado espiritual y evaluación de la espiritualidad, y otros 3 trabajos centrados en temáticas relacionadas (28) . Sin embargo, y a pesar de esta necesidad de evaluación, pocos cuestionarios han sido evaluados en el contexto de la enfermedad avanzada (29) , y las que sí lo han hecho, cuentan con diversas limitaciones. ...
... Para revisar los resultados más recientes identificados en la literatura de cuidados paliativos, se llevó a cabo una revisión sistemática, siguiendo las guías PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) (32) . Los pasos y criterios seguidos replican el estudio llevado a cabo por Oliver et al. (28) , actualizando los resultados de las aportaciones realizadas durante los años 2015-2016. ...
... Siguiendo los pasos de Oliver et al. (28) , se buscó en 22 bases de datos incluidas en la metabase de datos ProQuest Central. Para localizar artículos adicionales, se utilizó el motor de búsqueda Google Académico. ...
Article
Full-text available
Objective: review of the more recent questionnaires assessing spiritual needs and resources in palliative care, and determine their clinical applicability in our environment. Methods: systematic review, following PRISMA guidelines, of all publications about spirituality appeared on 2015-2016. Papers had to be focused on spiritual care or spirituality assessment, based on a palliative care population, and gone through a peer review. Results: a total of 42 publications were identified, but after the evaluation of two independent observers, only 15 fulfilled the selection criteria. The selected papers were analyzed according to their characteristics, psychometric properties and applicability. Conclusions: the need of improving spiritual care in the dying process lead to the advent of many assessment and spiritual care tools. Their use has to be considered together with the clinician experience, their applicability on the cultural context and their psychometric properties.
... Actualmente, es frecuente la publicación de nuevos cuestionarios de evaluación y acompañamiento espiritual, aplicados en distintas poblaciones y nuevas aproximaciones a la espiritualidad. De hecho, en una revisión de los trabajos llevados a cabo durante el año 2014, se identificaron 6 estudios dirigidos a estudiar las propiedades psicométricas de nuevas y ya conocidas escalas de medida de la espiritualidad, 3 revisiones sobre la medida de la espiritualidad o aspectos relacionados, 3 trabajos cuyo objetivo fue consensuar la definición del cuidado espiritual y evaluación de la espiritualidad, y otros 3 trabajos centrados en temáticas relacionadas (28) . Sin embargo, y a pesar de esta necesidad de evaluación, pocos cuestionarios han sido evaluados en el contexto de la enfermedad avanzada (29) , y las que sí lo han hecho, cuentan con diversas limitaciones. ...
... Para revisar los resultados más recientes identificados en la literatura de cuidados paliativos, se llevó a cabo una revisión sistemática, siguiendo las guías PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) (32) . Los pasos y criterios seguidos replican el estudio llevado a cabo por Oliver et al. (28) , actualizando los resultados a las aportaciones realizadas durante los años 2015-2016. ...
... Finalmente, se hizo acopio de las ideas principales, que se presentan de forma breve en estas páginas. Siguiendo los pasos de Oliver et al. (28) , se buscó en 22 bases de datos incluidas en la metabase de datos ProQuest Central. Para localizar artículos adicionales, se utilizó el motor de búsqueda Google Académico. ...
Article
Full-text available
Healthcare professionals, and specially the ones in oncology and palliative care, are frequently questioned about our patients’ suffering. The biomedical model is not enough for understanding and caring for it. Therefore, the perspective needs to be widened through a more open vision that includes our spiritual dimension. Spirituality is a human universal, that expresses as the dynamism that boosts our infinite desire of plenitude and happiness, that characterizes human condition and that is expressed in the net of relationships stablished by each person. Severe illness and proximity to death are opportunities of an opening to this dimension and of healing. Professionals that know this process can approach from hospitality, presence and compassion, and accompany patients in this journey. In this paper, we try to explore in a synthesized way, what is understood by spirituality, clinical spirituality, spiritual resources and needs, the journey of a person going through a suffering, loose or dying process, and the attitudes and tools of professionals to explore and accompany in this difficult and not very busy path.
... Por otro parte, se describen estrategias sustitutivas efectivas en el abordaje del duelo y la muerte, tales como el trabajo en equipo, la escucha activa, la atención enfocada en el significado de la pérdida para cada familia en aislamiento, el refuerzo positivo a la misma por las acciones desarrolladas 9 , la realización y envío de cartas de condolencia 5 , la realización de un diario del proceso 7 , el refuerzo de los autocuidados 15 y el contacto y apoyo entre grupo de iguales 14 . La ejecución de rituales, la atención de la espiritualidad y la necesidad de una despedida se presenta como eje centran para evitar los duelos complicados 5,11,12,15 . ...
... La experiencia de unidad, de sentirse parte de un grupo, de trabajar de manera unánime con otras disciplinas, así como tomar decisiones de manera consensuada, suponen elementos preventivos en el abordaje del duelo 9 . Además, la formación, la investigación y la práctica clínica basada en la evidencia, es contemplada por varios autores 7,9,12 , como elementos indispensables para ofrecer unos cuidados seguros y prevenir elementos que dificulten el afrontamiento, como pueden ser la información contradictoria, diagnósticos contradictorios, o la esperanza infundada. ...
Article
Resumen Objetivo: Realizar una síntesis de la evidencia disponible para establecer recomendaciones sobre el abordaje del duelo y la muerte en familiares de pacientes Covid19 así como ofrecer recursos sustitutivos de los rituales y procedimientos necesarios con el fin de favorecer duelos funcionales y prevenir duelos complicados. Método: Se realizó búsqueda bibliográfica en bases de datos MEDLINE, EMBASE, SCIENCEDIRECT, WOS, CINAHL y CUIDEN, utilizando términos MeSH, (family, patient, isolation hospitals, grief, death, ceremonial behavior, self care, affects y social networking) con su ecuación boleana correspondiente. Los artículos seleccionados se sometieron a una lectura crítica a través del Critical Apraisal Skill Programme en español (CASPe). Resultados: Se encontraron 560 artículos atingentes, tras aplicar los criterios de selección, 13 estudios se incluyeron en el análisis, de los cuales 8 eran revisiones sistemáticas, 3 estudios cualitativos,1 estudio piloto prospectivo transversal y 1 guía clínica, que permitieron identificar estrategias para el abordaje del duelo y la muerte atendiendo a este momento de excepcionalidad covid19, incidiendo en el manejo competencial de los profesionales sanitarios en apoyo emocional y el acompañamiento así como el seguimiento durante todo el proceso, así como en la comunicación con la familia. Conclusión: En el proceso final de la vida en tiempos de COVID19, los profesionales sanitarios deben trabajar despedidas, los ritos fúnebres alternativos, la atención espiritual y el afrontamiento precoz que permitirán a su vez la prevención del duelo complicado.
... Third, intervention programs in old age should consider the spirituality dimension and work on improving it. Spirituality interventions are common in palliative care studies and have shown good results (Oliver et al. 2015(Oliver et al. , 2017a, but they are far less common in old age per se. This research has strengths and limitations. ...
Article
Full-text available
Wellbeing is a major psychological construct in the social research tradition. The model of successful aging is one of the most well established models in the study of older people’s wellbeing. However, this model has been criticized, among other things, because it is based on the biomedical model and ignores an essential aspect of human beings, their spirituality. The aim of this study is to determine the predictive power of spirituality on life satisfaction, while controlling for the main components of successful aging. The sample consisted of 1016 people aged 55 years or older. A structural model with latent variables was specified and estimated using Mplus. The results revealed that, along with the traditional variables included in the successful aging model, spirituality is a relevant factor in adults of advancing age’s wellbeing and, specifically, their life satisfaction. The main conclusion is that the most powerful predictor of life satisfaction is the social component, although spirituality also plays a relevant role as an additional dimension in the successful aging paradigm.
Article
Full-text available
Objectivo: Estabelecer recomendações de consenso sobre boas práticas clínicas no acompanhamento de doentes em fim de vida. Métodos: Uma comissão de 12 peritos espanhóis e portugueses propôs 37 recomendações. Realizou-se um processo Delphi em 2 rondas, com a participação dum painel com105 membros, englobando internistas, outros clínicos, enfermeiros, doentes, juristas, especialistas em bioética, gestores de saúde, políticos e jornalistas. Para cada recomendação, foi enviado um questionário com uma escala de Likert com 5 categorias por questão. Definiu-se consenso forte quando > 95% das respostas estavam totalmente de acordo ou > 90% estavam de acordo e totalmente de acordo; consenso fraco quando > 90% estavam totalmente de acordo ou > 80% estavam de acordo e totalmente de acordo. Resultados: O painel abordou sete áreas específicas com 37 recomendações que abarcam: Identificação do doente; Conhecimento dos valores e preferências do doente; Informação; Necessidades do doente; Acompanhamento e cuidados; Sedação paliativa e Cuidados pós-morte. Conclusões: Um Processo Delphi, com participação multidisciplinar, permitiu estabelecer, normas de boas práticas clínicas para os cuidados em fim de vida com envolvimento de doentes, agentes sociais e profissionais de saúde.
Article
Aim To develop consensus recommendations about good clinical practice rules for caring end-of-life patients. Methods A steering committee of 12 Spanish and Portuguese experts proposed 37 recommendations. A two rounds Delphi method was performed, with participation of 105 panelists including internists, other clinicians, nurses, patients, lawyers, bioethicians, health managers, politicians and journalists. We sent a questionnaire with 5 Likert-type answers for each recommendation. Strong consensus was defined when >95% answers were completely agree or >90% were agree or completely agree; and weak consensus when >90% answers were completely agree or >80% were agree or completely agree. Results The panel addressed 7 specific areas for 37 recommendations spanning: identification of patients; knowledge of the disease, values and preferences of the patient; information; patient’s needs; support and care; palliative sedation, and after death care. Conclusions The panel formulated and provided the rationale for recommendations on good clinical practice rules for caring end-of-life patients.
Article
Full-text available
This article addressed the following questions: How are spirituality, spiritual need, and spiritual care in aged care defined? What constitutes spiritual care for older people in aged care? From an organisational perspective, what are barriers and enablers to providing spiritual care? Spirituality and spiritual care were defined in a variety of ways in the literature. The literature endorsed nurses and other aged care staff engaging in elements of spiritual care of older people as valuable. A whole-of-organisation approach is required rather than leaving it to the individual. New guidelines are being developed specifically for spiritual care in aged care.
Article
Full-text available
Systematic reviews should build on a protocol that describes the rationale, hypothesis, and planned methods of the review; few reviews report whether a protocol exists. Detailed, well-described protocols can facilitate the understanding and appraisal of the review methods, as well as the detection of modifications to methods and selective reporting in completed reviews. We describe the development of a reporting guideline, the Preferred Reporting Items for Systematic reviews and Meta-Analyses for Protocols 2015 (PRISMA-P 2015). PRISMA-P consists of a 17-item checklist intended to facilitate the preparation and reporting of a robust protocol for the systematic review. Funders and those commissioning reviews might consider mandating the use of the checklist to facilitate the submission of relevant protocol information in funding applications. Similarly, peer reviewers and editors can use the guidance to gauge the completeness and transparency of a systematic review protocol submitted for publication in a journal or other medium.
Article
Full-text available
Many mourners turn to their spiritual beliefs and traditions when confronted by the death of a loved one. However, prior studies have either focused primarily on the benefits of faith following loss or studied spiritual struggle outside the context of bereavement. Moreover, scales to measure bereavement-related crises of faith and interventions specifically designed for spiritually inclined, distressed grievers are virtually non-existent. Our program of research, which to date has consisted of working with Christian grievers and is outlined below, elucidates complicated spiritual grief (CSG)-a spiritual crisis following the loss of a loved one. For example, our longitudinal examination of 46 African American homicide survivors established the relation between positive religious coping, CSG, and complicated grief (CG), to clarify whether religious coping more strongly predicted bereavement distress or vice versa, with a follow-up study that determined the relation between religious coping and posttraumatic stress disorder (PTSD) and depression. We replicated and expanded these findings with a diverse sample of 150 grievers to explore the complex relation between CSG, CG, and meaning making in a comparison study of mourners who had experienced traumatic-versus natural death losses. In a companion study, we qualitatively analyzed 84 grievers' narratives and interviewed a 5-member focus group to capture and learn from their firsthand experiences of spiritual distress. To close the gap in terms of CSG assessment, we also developed and validated the Inventory of Complicated Spiritual Grief (ICSG). Currently, our ongoing CSG investigation extends in several directions: first, to a sample of family members anticipating the loss of their hospice-eligible loved one in palliative care; and, second, to the development and testing of a writing-intensive intervention for newly bereaved, spiritually inclined grievers.
Article
Full-text available
Purpose Every health care sector including hospice/palliative care needs to systematically improve services using patient-defined outcomes. Data from the national Australian Palliative Care Outcomes Collaboration aims to define whether hospice/palliative care patients’ outcomes and the consistency of these outcomes have improved in the last 3 years. Methods Data were analysed by clinical phase (stable, unstable, deteriorating, terminal). Patient-level data included the Symptom Assessment Scale and the Palliative Care Problem Severity Score. Nationally collected point-of-care data were anchored for the period July–December 2008 and subsequently compared to this baseline in six 6-month reporting cycles for all services that submitted data in every time period (n = 30) using individual longitudinal multi-level random coefficient models. Results Data were analysed for 19,747 patients (46 % female; 85 % cancer; 27,928 episodes of care; 65,463 phases). There were significant improvements across all domains (symptom control, family care, psychological and spiritual care) except pain. Simultaneously, the interquartile ranges decreased, jointly indicating that better and more consistent patient outcomes were being achieved. Conclusion These are the first national hospice/palliative care symptom control performance data to demonstrate improvements in clinical outcomes at a service level as a result of routine data collection and systematic feedback.
Article
Full-text available
Background: Dying with dignity is regarded as a goal of quality end-of-life care. However, the meaning of dying with dignity is ambiguous, and no comprehensive synthesis of the existing literature has been published. Aim: To synthesize the meaning of dying with dignity and to identify common aspects of dignity in end-of-life care. Design: This is an integrative review article. Methodological strategies specific to the integrative review method proposed by Whittemore and Knafl were followed to conduct data analysis. The matrix method was used to summarize characteristics of included articles. Data sources: Five electronic databases were searched in October 2012, with no date restriction: PubMed, CINAHL, PsycINFO, Academic Search Premier, and Social Sciences Abstracts. Theoretical reports, and both qualitative and quantitative empirical reports, focused on dignity in end-of-life care were included. Results: Themes of dying with dignity are as follows: a human right, autonomy and independence, relieved symptom distress, respect, being human and being self, meaningful relationships, dignified treatment and care, existential satisfaction, privacy, and calm environment. Factors influencing dignity include demographic, illness-related, and treatment-/care-related factors, as well as communication. Models of dignity in end-of-life care and instruments to measure dignity were reported. Interventions to support dignity stressed physical, psychological, and spiritual supports not only to dying patients but also to family members. Conclusion: This review clarified the meaning of dying with dignity and synthesized common aspects of dignity in end-of-life care. Further research is needed to evaluate the meaning of dying with dignity across cultures and to explore individualized dignity-based care.
Article
Context: There is increasing interest in providing nonpharmacological treatments, including therapeutic life review interventions, to enhance palliative care patients' existential/spiritual domains. Objectives: To review quantitative evaluations of therapeutic life review interventions to assist palliative care patients with prognoses of 6 months or fewer in addressing existential and spiritual domains. Methods: Comprehensive searches of PubMed, Medline, Web of Science, CINAHL, Scopus, and PsycINFO were undertaken using a validated palliative care search filter in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Statement. Each publication that met the inclusion criteria was read and classified according to the American Heart Association's Disease Management Taxonomy, Consolidated Standards of Reporting Trials, QualSyst, and the Task Force on Psychological Interventions. Intervention procedures and outcomes were described. Results: The searches yielded 1768 articles, of which 14 met the inclusion criteria. The articles reported six interventions evaluated once and four interventions evaluated twice, resulting in 10 distinct interventions. The interventions were evaluated in randomized controlled trials (n = 9), single-arm studies (n = 3), and a cohort study (n = 1). Interventions were conducted in one to eight 15-160 minute sessions by psychologists, social workers, and nurses. Attrition rates were 12%-50% because of patient death and deterioration. Participants lived 28-110 days after completion. Significant results were reported in 11 of 14 studies. Conclusion: There are few studies evaluating therapeutic life review interventions, although results are promising. Further studies are required that use stricter selection criteria to demonstrate efficacy before these interventions are adopted into clinical practice. Further study may include the effect of these interventions on the interventionist and the bereaved family and caregivers in long-term follow-up.
Article
Purpose Palliative care-related problems have not been measured in Africa in line with the WHO definition. This study aimed to measure the three-day period intensity of multidimensional problems (physical, psychological, social, and spiritual) among advanced cancer patients in Kenya and Uganda. Methods Adults with advanced malignant disease gave self-report data to the African Palliative Outcome Scale (POS). Results Among 210 respondents, more than half had an underlying HIV diagnosis (51.9 %). The worst ranked POS items were pain and information. In three multivariable ordinal logistic regression models with the 3 POS factors as dependent variables, for the first model (factor 1 physical and psychological well-being), as age increased, the well-being also improved (B = 0.022, p = 0.037), and as physical function score worsened, factor score also worsened (B = −0.685, p
Article
Abstract Two conferences, Creating More Compassionate Systems of Care (November 2012) and On Improving the Spiritual Dimension of Whole Person Care: The Transformational Role of Compassion, Love and Forgiveness in Health Care (January 2013), were convened with the goals of reaching consensus on approaches to the integration of spirituality into health care structures at all levels and development of strategies to create more compassionate systems of care. The conferences built on the work of a 2009 consensus conference, Improving the Quality of Spiritual Care as a Dimension of Palliative Care. Conference organizers in 2012 and 2013 aimed to identify consensus-derived care standards and recommendations for implementing them by building and expanding on the 2009 conference model of interprofessional spiritual care and its recommendations for palliative care. The 2013 conference built on the 2012 conference to produce a set of standards and recommended strategies for integrating spiritual care across the entire health care continuum, not just palliative care. Deliberations were based on evidence that spiritual care is a fundamental component of high-quality compassionate health care and it is most effective when it is recognized and reflected in the attitudes and actions of both patients and health care providers.
Article
Quality of life (QOL) is the main outcome measure for patients with advanced cancer at the end of life (EOL). The McGill Quality of Life questionnaire (MQOL) is designed specifically for palliative care patients, and has been translated and validated in Hong Kong and Taiwan. This study aimed to investigate the QOL of patients with advanced cancer using the MQOL-Taiwan version after cultural adaptation to the Chinese mainland. A cross-sectional survey design was used. QOL data from patients with advanced cancer were gathered from 13 hospitals including five tertiary hospitals, six secondary hospitals, and community health care service centers in Shanghai and analyzed. QOL was assessed using the MQOL-Chinese version. Statistical analyses were performed using descriptive statistics, multiple regression analysis, and Spearman rank correlation analysis. A total of 531 cancer patients (297 male, 234 female) in 13 hospitals were recruited into the study and administered the MQOL-Chinese. The score of the support subscale was highest (6.82), and the score of the existential well-being subscale was the lowest (4.65). The five physical symptoms most frequently listed on the MQOL-Chinese were pain, loss of appetite, fatigue, powerless, and dyspnea. Participants' sex, educational level, number of children, and disclosure of the disease, and hospital size were associated with their overall QOL. The Spearman rank correlation analysis found that Karnofsky Performance Status scores correlated with the MQOL-Chinese single item score, physical well-being, psychological well-being, existential well-being, and support domains (P<0.05). Our results revealed the aspects of QOL that need better attention for Chinese palliative care patients with advanced cancer. The association between the characteristics of patients, Karnofsky Performance Status and their QOL also were identified.
Article
The adoption of evidence-based hierarchies and research methods from other disciplines may not completely translate to complex palliative care settings. The heterogeneity of the palliative care population, complexity of clinical presentations and fluctuating health states present significant research challenges. The aim of this narrative review is to explore the debate about the use of current evidence-based approaches for conducting research, such as randomized controlled trials (RCTs) and other study designs, in palliative care, and more specifically to (a) describe key myths about palliative care research; (b) highlight substantive challenges of conducting palliative care research, using case illustrations; and (c) propose specific strategies to address some of these challenges. Myths about research in palliative care revolve around evidence hierarchies, sample heterogeneity, random assignment, participant burden and measurement issues. Challenges arise because of the complex physical, psychological, existential and spiritual problems faced by patients, families and service providers. These challenges can be organized according to six general domains: patient, system/organization, context/setting, study design, research team and ethics. A number of approaches for dealing with challenges in conducting research fall into five separate domains: study design, sampling, conceptual, statistical, and measures and outcomes. Although RCTs have their place whenever possible, alternative designs may offer more feasible research protocols that can be successfully implemented in palliative care. Therefore, this article highlights "outside the box" approaches that would benefit both clinicians and researchers in the palliative care field. Ultimately, the selection of research designs is dependent on a clearly articulated research question, which drives the research process.
Article
Context Spiritual distress, including meaninglessness and hopelessness, is common in advanced disease. Spiritual care is a core component of palliative care, yet often neglected by health care professionals owing to the dearth of robust evidence to guide practice. Objectives To determine research priorities of clinicians/researchers and thus inform future research in spiritual care in palliative care. Methods An online, cross-sectional, mixed-methods survey was conducted. Respondents were asked whether there is a need for more research in spiritual care, and if so, to select the five most important research priorities from a list of 15 topics. Free-text questions were asked about additional research priorities and respondents' single most important research question, with data analyzed thematically. Results In total, 971 responses, including 293 from palliative care physicians, 112 from nurses, and 111 from chaplains, were received from 87 countries. Mean age was 48.5 years (standard deviation, 10.7), 64% were women, and 65% were Christian. Fifty-three percent reported their work as “mainly clinical,” and less than 2.5% stated that no further research was needed. Integrating quantitative and qualitative data demonstrated three priority areas for research: 1) development and evaluation of conversation models and overcoming barriers to spiritual care in staff attitudes, 2) screening and assessment, and 3) development and evaluation of spiritual care interventions and determining the effectiveness of spiritual care. Conclusion In this first international survey exploring researchers' and clinicians' research priorities in spiritual care, we found international support for research in this domain. Findings provide an evidence base to direct future research and highlight the particular need for methodologically rigorous evaluation studies.