Research Priorities in Spiritual Care

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Original Article

Research Priorities in Spiritual Care:An International Survey of Palliative CareResearchers and CliniciansLucy Selman, BA, MPhil, PhD, Teresa Young, BSc, Mieke Vermandere, MD,

Ian Stirling, BSc, BD, MTh, MSc, and Carlo Leget, PhD, on behalf of the Research

Subgroup of the European Association for Palliative Care Spiritual Care TaskforceDepartment of Palliative Care, Policy and Rehabilitation (L.S.), Kings College London, Cicely

Saunders Institute, London; Lynda Jackson Macmillan Centre (T.Y.), Mount Vernon Cancer Centre,

Northwood, United Kingdom; Department of General Practice (M.V.), Catholic University of Leuven,

Leuven, Belgium; Ayrshire Hospice (I.S.), Ayr, United Kingdom; and Department of Ethics of Care

(C.L.), University of Humanistic Studies, Utrecht, The Netherlands

AbstractContext. 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 robustevidence to guide practice.

Objectives. To determine research priorities of clinicians/researchers and thusinform 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 spiritualcare, and if so, to select the five most important research priorities from a list of 15topics. Free-text questions were asked about additional research priorities and

respondents single most important research question, with data analyzedthematically.

Results. In total, 971 responses, including 293 from palliative care physicians,112 from nurses, and 111 from chaplains, were received from 87 countries. Meanage was 48.5 years (standard deviation, 10.7), 64% were women, and 65% wereChristian. Fifty-three percent reported their work as mainly clinical, and lessthan 2.5% stated that no further research was needed. Integrating quantitativeand qualitative data demonstrated three priority areas for research: 1)development and evaluation of conversation models and overcoming barriers tospiritual care in staff attitudes, 2) screening and assessment, and 3) developmentand evaluation of spiritual care interventions and determining the effectiveness ofspiritual care.

Conclusion. In this first international survey exploring researchers andclinicians research priorities in spiritual care, we found international support for

Address correspondence to: Lucy Selman, BA, MPhil,PhD, Department of Palliative Care, Policy andRehabilitation, Kings College London, Cicely

Saunders Institute, Bessemer Road, London, UnitedKingdom. E-mail:[email protected]

Accepted for publication: October 30, 2013.

2014 U.S. Cancer Pain Relief Committee.Published by Elsevier Inc. All rights reserved.

0885-3924/$ - see front matterhttp://dx.doi.org/10.1016/j.jpainsymman.2013.10.020

Vol. - No. - - 2014 Journal of Pain and Symptom Management 1
mailto:[email protected]://dx.doi.org/10.1016/j.jpainsymman.2013.10.020http://dx.doi.org/10.1016/j.jpainsymman.2013.10.020http://dx.doi.org/10.1016/j.jpainsymman.2013.10.020http://dx.doi.org/10.1016/j.jpainsymman.2013.10.020http://dx.doi.org/10.1016/j.jpainsymman.2013.10.020http://dx.doi.org/10.1016/j.jpainsymman.2013.10.020http://dx.doi.org/10.1016/j.jpainsymman.2013.10.020http://dx.doi.org/10.1016/j.jpainsymman.2013.10.020http://dx.doi.org/10.1016/j.jpainsymman.2013.10.020http://dx.doi.org/10.1016/j.jpainsymman.2013.10.020http://dx.doi.org/10.1016/j.jpainsymman.2013.10.020http://dx.doi.org/10.1016/j.jpainsymman.2013.10.020http://dx.doi.org/10.1016/j.jpainsymman.2013.10.020http://dx.doi.org/10.1016/j.jpainsymman.2013.10.020http://dx.doi.org/10.1016/j.jpainsymman.2013.10.020mailto:[email protected]


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research in this domain. Findings provide an evidence base to direct futureresearch and highlight the particular need for methodologically rigorousevaluation studies. J Pain Symptom Manage 2014;-:-e-. 2014 U.S. Cancer PainRelief Committee. Published by Elsevier Inc. All rights reserved.

Key WordsSpiritual care, spirituality, research priorities, survey, international, Europe, palliative care

IntroductionSpiritual distress, including meaninglessness

and hopelessness, is known to be highly preva-lent in advanced disease and is associated withpoor quality of life,1 end-of-life despair,2 re-quests for physician-assisted suicide,3 anddissatisfaction with care among patients.4

There is a dearth of research into spiritualdistress among family caregivers,5 but highlevels ofspiritual distress and need have beenreported,6,7 particularly when their loved onehas a serious or terminal illness.8e10

As the World Health Organization defini-tion of palliative care and global policyguidance11e14makeclear,spiritualcareis,there-fore, a core component of palliative care. How-ever, it is often neglected in both clinicalpractice and research. Although patients wouldlike to discuss their spiritual beliefs with their

physicians and have spiritual needs, thoseneeds are underaddressed by health careprofessionals.4,15e18Balboni et al.,1 for example,found that of 230 seriously ill cancer patients inthe U.S., 72% reported that their spiritual needswere supported minimally or not at all by themedical system. The Round 2 audit of the Liver-pool Care Pathway, which is widely disseminatedacross hospitals, hospices, and nursing homes intheU.K.,19 showed that only 30% of patients hadtheir religious needs assessed, and the resultswere not documented for 48% of cases.20

The neglect of spiritual assessment is alsofound in specialist palliative care. An audit offive palliative care support teams using theSupport Team Assessment Schedule foundthat 49.5% of patients were not assessed forspiritual care at all and a further 24% werenot assessed at the initial assessment.21 Recentevidence from the U.S. suggests that cancer pa-tients reporting that their spiritual needs arenot well supported by the health care teamhave higher end-of-life care costs, particularly

among ethnic minority groups and patientswith high levels of religious coping.22

Reasons for the current inattention to spiri-tual needs include a lack of confidence andcompetence in the provision of spiritual careamong many health care professionals15,23,24

and the limited amount of robust empirical ev-

idence to inform clinical practice and policyguidance.25e27 The U.K. end-of-life care strat-egy, for example, acknowledges that spiritualcare is a significant gap in current guid-ance.28 A systematic review of the literaturefrom 2000 to 2010 also highlights the needto strengthen the evidence base of spiritualcare at the end of life by evaluating modelsof practice and staff training and developingaccessible and viable interventions.29 A na-tional survey of family physicians in the U.S.found that respondents would be more likelyto initiate discussions of spirituality with pa-

tients if presented with evidence that spiritual-ity was associated with improved outcomes.30Arobust evidence base to guide clinicians in theprovision of spiritual care, and thus ensure pa-tients and family members spiritual needs aremet, therefore, is essential.

The European Association for Palliative Care(EAPC) Spiritual Care Taskforce was launchedin May 2011 with the aim of determining howto meet the spiritual needs of patients and theirfamilies in all palliative care settings. An aim ofthe EAPC Spiritual Care Taskforce is to inform

the development of evidence-based spiritualcare by developing an agenda to informresearch in this area to improve staff compe-tence and confidence and outcomes for pa-tients and carers. To this end, in this study, weaimed to determine the research priorities ofthose working in palliative care, inform futureresearch, and contribute toward building arobust evidence base for spiritual care in pallia-tive care.

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MethodsStudy Design

An online, cross-sectional, mixed-methodssurvey methodology was used in a convergentparallel design.31 A core assumption of the

mixed-methods approach is that the combina-tion of qualitative and quantitative approachesprovides a more complete understanding ofthe research problem than either approachalone. In the convergent parallel mixed-methods design, quantitative and qualitativedata are collected and analyzed separatelyand then the results are compared and inte-grated side-by-side.

RecruitmentClinicians, researchers, and others working

in palliative and end-of-life care were invitedto participate through several avenues: dele-gates (n 6000) of the EAPC Lisbon congressregistered on the EAPC database were invitedvia an e-mail from the EAPC; the link tothe survey appeared in bulletins from World-wide Hospice and Palliative Care Online(2000 readers), U.K. Hospice Online (2500readers), and the National Council for Pallia-tive Care (4900 readers). Links to the surveyalso were posted on the EAPC home page,the EAPC Spiritual Care Taskforce web page,

the EAPC blog, the Worldwide PalliativeCare Alliance home page, and the homepage of the Cicely Saunders Institute at KingsCollege London.

In addition, invitations to distribute the sur-vey were sent to EAPC Taskforce members andboard members in Belgium, Finland, France,Georgia, Germany, Poland, Slovenia, andSwitzerland and to the head offices of nationalpalliative care associations in The Netherlands,Austria, Cyprus, Czech Republic, France,Greece, Ireland, Italy, Malta, Norway, Romania,Spain, Sweden, and Ukraine.

The survey also was advertised by theauthors to delegates at the EAPC congressin Trondheim in June 2012 and through theauthors network of personal contacts. Thesurvey was hosted on the EAPC Web siteand was open between April 4 and August13, 2012. Ethical approval to conduct thestudy was obtained from the Kings CollegeLondon Research Ethics Committee (BDM/11/12-39).

Data CollectionThe survey was developed by L. S. and T. Y.

in collaboration with the EAPC SpiritualCare Taskforce Research Subgroup. Respon-dents were asked, Do you believe there is a

need for more research to inform the provi-sion of spiritual care in the context of palliativecare? Those respondents replying Yes wereasked to select the five most importantresearch priorities from a list of 15 topics.Free-text questions were asked about addi-tional research priorities (Qualitative Question1) and respondents single most importantresearch question (Qualitative Question 2).Demographic data were collected, and partici-pants were asked to record any religious orspiritual beliefs.

Quantitative Data AnalysisResponses were checked to ensure that par-

ticipants had chosen only five priorities andcorrectly assigned rankings. Simple countsand descriptive statistics were used to analyzethe demographic data. Rankings were assigneda numerical score (first priority 5 points andfifth priority 1 point), and a sum score wasthus calculated for each priority. Once thetop five priorities had been identified, the per-centage of respondents choosing them as theirfirst or second choice was calculated for each

of the 11 religious categories and four primaryareas of work and compared with the overallsample distribution to explore possible trends.

Qualitative Data AnalysisThematic content analysis32,33 was used to

identify and rank additional research prioritiesand most important research questions. Qual-itative data were analyzed in Excel by M. V.and L. S., who managed the analysis of theother research priorities and single mostimportant research question data, respec-tively. Separate coding frames were con-structed inductively for each set of data. M.V. and L. S. constructed frameworks individu-ally and then met to discuss and review prelim-inary findings and agree on the final codingframes. A constant comparison, iterativeapproach was adopted to identify themeswithin a conceptually clear framework thatfacilitated deeper analysis and thematic inte-gration.34 All themes were clearly defined.

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ResultsA total of 971 responses (713 from Europe

and 258 from the rest of the world) werereceived from 87 countries (Fig. 1). Participantcharacteristics are presented in Table 1. Re-

spondents mean age was 48.5 years (standarddeviation, 10.7), 64% were women, 65% wereChristian, and 10% were spiritual but not reli-gious. Fifty-three percent reported their workas mainly clinical. Two hundred ninety-threerespondents were palliative care physicians,112 were nurses, and 111 were chaplains.

Of the 971 respondents, 24 said that researchwas not a priority, 807 provided valid and usabledata for the quantitative analysis, and 140 didnot rank the research priorities or did not doso according to the instructions; however, their

qualitative responses could be used. This group(n 140) included significantly fewer women(chi-square 4.96, P 0.02, 1 degrees offreedom [DF]) and significantly more respon-dents equally involved in clinical and researchwork (chi-square 8.75,P 0.03, 3 DF) thanthe group of 807 (Table 1).

Quantitative DataResearch priorities from the quantitative

data analysis are presented in Table 2. The

top five highest ranked areas for researchwere 1) the evaluation of screening toolsused to identify patients with spiritual needs,2) the development and evaluation of conver-sation models for spiritual conversations withpatients, 3) evaluation of the effectiveness ofspiritual care, 4) development and evaluationof spiritual interventions (e.g., pastoral coun-seling, interventions by nonspecialist spiri-tual care providers), and 5) determiningthe prevalence of spiritual distress amongpatients in different cultural and religiouspopulations.

For the top five highest ranked areas,Table 3 presents the number of respondentsranking them as first or second priority ac-cording to religious/spiritual affiliation andprimary area of work. Religious/spiritual affili-

ation was condensed to three categories toavoid cells with less than five respondents.Chi-square tests showed that observed and ex-pected values were similar in all cells whencompared with the group of all 807 respon-dents, demonstrating that the priorities cho-sen appear to be independent of religious/spiritual affiliation. For primary area of work,significantly more clinicians and fewerothers chose screening as a priority (chi-square 9.52, P 0.02, 3 DF).

Fig. 1. Geographical distribution of respondents (TotalN 971). aEurope, bAfrica, cMiddle East (Armenia, Geor-gia, Iran, Iraq, Israel, Palestine, Saudi Arabia, and Turkey), dSouth America, eAustralasia (Australia and New Zea-land), fAsia_1 (Bangladesh, India, and Pakistan), gAsia_2 (China, Hong Kong, Taiwan, and South Korea),hCentral America (Belize, Costa Rica, Cuba, Guatemala, and Mexico), iRussia/Baltic (Estonia, Latvia, Lithuania,and Russia), jCanada, kUSA, lAsia_3 (Indonesia, Malaysia, Philippines, and Singapore), mJapan.



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Qualitative DataResults of the content analysis of qualitative

data regarding other research priorities (Qual-itative Question 1) are presented in Table 4;44.5% (n 432) said that this question wasnot applicable or that the list given was com-plete. Other stated priorities occurred in 26themes, 10 of which were the same as or closelyrelated to areas stated in the preselected list.The top five most prevalent themes were 1) un-derstanding of spiritual care, 2) staff educationregarding spiritual care, 3) understanding ofspiritual needs and distress, 4) spiritual carefor nonreligious people and people ofdifferent faiths, and 5) conceptualizationsand definitions of spirituality/the spiritual.All the top five themes were new areas, thatis, none occurred in the preselected list.

Exemplifying quotations for the top fivethemes are presented inTable 5.

Results of the content analysis of dataregarding the single most important researchquestion (Qualitative Question 2) are pre-sented inTable 6. Data in this area occurredin 22 themes, 10 of which were the same asor closely related to areas in the preselected

list. The top five most prevalent themes were1) responding to spiritual needs and evalu-ating spiritual interventions, 2) investigatingthe effect(iveness) of spiritual care, 3) un-derstanding spiritual needs and spiritualdistress, 4) the identification of spiritual needs(screening), and 5) questions related to spiri-tual discussions or conversations. Only one ofthese (understanding spiritual needs and spir-itual distress) was a theme not included in the

Table 1Demographic Characteristics

CharacteristicAll Respondents(N 971), n(%)

Respondents Includedin Quantitative Analysis

(N 807), n(%)

Respondents Not Included inQuantitative Analysis

(N 140), n(%)

Age, years, mean (SD) 48.5 (10.7) 48.4 (10.6) 49.6 (11.5)

GenderFemale 621 (64) 534 (66)a 79 (56)a

ReligionChristian 627 (64.5) 528 (65.4) 91 (65.0)Spiritual but not religious 99 (10.1) 82 (10.2) 15 (10.7)Atheist 50 (5.1) 42 (5.2) 4 (2.9)Did not wish to disclose 44 (4.5) 36 (4.5) 5 (3.6)Agnostic 36 (3.7) 30 (3.7) 3 (2.1)Humanist 27 (2.8) 21 (2.6) 5 (3.6)Buddhist 24 (2.5) 21 (2.6) 3 (2.1)Other 19 (2.0) 16 (2.0) 2 (1.4)Muslim 16 (1.6) 10 (1.2) 6 (4.3)Jewish 15 (1.5) 10 (1.2) 3 (2.1)Hindu 14 (1.4) 11 (1.4) 3 (2.1)

OccupationPalliative care physician 293 (30.2) 243 (30.1) 42 (30.0)

Palliative care nurse 112 (11.6) 93 (11.5) 19 (13.6)Chaplain/health care servicespiritual care provider

111 (11.4) 97 (12.0) 13 (9.3)

Researcher 90 (9.3) 79 (9.8) 9 (6.4)Otherb 87 (9.0) 73 (9.0) 13 (9.3)Other physician 74 (7.6) 52 (6.4) 19 (13.6)Manager 44 (4.5) 37 (4.6) 7 (5.0)Psychologist/counselor 53 (5.4) 45 (5.6) 6 (4.3)GP/community-based physician 40 (4.1) 34 (4.2) 2 (1.4)Other nurse 40 (4.1) 33 (4.1) 5 (3.6)Social worker 27 (2.8) 21 (2.6) 5 (3.6)

WorkloadMainly clinical 501 (51.6) 419 (51.9) 68 (48.6)Equal clinical/research 200 (20.6) 156 (19.3)c 41 (29.3)c

Mainlyresearch 113 (11.6) 98 (12.1) 10 (7.1)Otherd 157 (16.2) 134 (16.6) 21 (15.0)

GP General Practitioner.aChi-square 0.03 (1 DF).bIncludes, for example, advocacy, administration, consultancy, coordination of services, and voluntary hospice work.cChi-square 0.03 (3 DF).dPredominantly teaching and administration.



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preselected list. Exemplifying quotations forthe top five themes are presented inTable 7.

DiscussionThis is the first large international survey to

explore researchers and clinicians research

priorities in spiritual care in palliative care.We found almost unanimous support forresearch in spiritual care among the interna-tional group of respondents, with less than2.5% of respondents stating that no furtherresearch was needed in this area. There was

wide agreement in the priorities identified inthe quantitative and qualitative data. Findingssuggest that there are three key priority areasfor research: 1) How do we help staff talkabout spiritual issues? This theme relates tothe development and evaluation of conversa-tion models to facilitate conversations aboutpatients and carers spiritual concerns and

overcoming barriers to spiritual care in staff at-titudes. 2) How do we identify patients andfamily members with spiritual needs? Thistheme concerns how many patients and carershave spiritual needs and screening and assess-ment to identify those with needs. 3) How

Table 2Research Priorities (N 807)

Priority Rank

Sum Score(Number

Prioritizing)

Evaluate screening tools used to identify patients with spiritual needs 1st 1243 (449)

Develop and evaluate conversation models for spiritual conversations with palliative patients 2nd 1219 (470)Evaluate the effectiveness of spiritual care 3rd 1194 (394)Develop and evaluate spiritual interventions, e.g., pastoral counseling, interventions by nonspecialist

spiritual care providers (e.g., physicians, nurses)4th 1185 (411)

Determine the prevalence of spiritual distress among people with incurable progressive illness indifferent cultural and religious populations

5th 1102 (401)

Conduct longitudinal studies to understand how patients spiritual needs change 6th 870 (287)Develop spiritual care for palliative care staff 7th 845 (261)Determine the best spiritual outcome measures for research and audit purposes in palliative care 8th 817 (254)Develop and evaluate models of spiritual care, e.g., community engagement, spiritual care in palliative

homecare9th 791 (253)

Develop spiritual care for family carers 10th 726 (216)Determine clinical factors potentially associated with spiritual distress, e.g., cancer types, cancer vs.

noncancer diagnoses11th 608 (185)

Determine demographic factors potentially associated with spiritual distress, e.g., age, gender,socioeconomic status

12th 486 (145)

Develop spiritual care for patients with dementia 13th 359 (107)Evaluate the cost-effectiveness of spiritual care 14th 339 (100)Develop spiritual care in pediatric palliative care 15th 321 (102)

Table 3Ranking of the Five Priority Areas as First or Second by Spiritual/Religious Belief and Primary Occupation

Respondent Characteristic

ScreeningTools

Ranked1st/2nd

(n 213)

ConversationModelsRanked1st/2nd

(n 251)

ClinicalEffectiveness

Ranked1st/2nd

(n 146)

InterventionsRanked1st/2nd

(n 176)

Prevalence ofDistressRanked1st/2nd

(n 200)

AllRespondents

(N 807)

Spiritual/religious belief, n(%)Christian 144 (67.6) 171 (68.1) 92 (63.0) 118 (67.0) 142 (71.0) 528 (65.4)Spiritual but not religious 17 (8.0) 22 (8.8) 17 (11.6) 23 (13.1) 16 (8.0) 82 (10.2)All other responses 52 (24.4) 58 (23.1) 37 (25.3) 35 (19.9) 42 (21.0) 197 (24.4)Chi-square, 2 DF (P) 1.56 (0.46) 1.36 (0.51) 0.61 (0.74) 3.85 (0.15) 3.75 (0.15)

Area of work,n(%)Clinical 127 (59.6)a 137 (54.6) 78 (53.4) 95 (54.0) 98 (49.0) 419 (51.9)Research 21 (9.9) 21 (8.4) 16 (11.0) 22 (12.5) 24 (12.0) 98 (12.1)Clinical and Research 41 (19.2) 52 (20.7) 20 (13.7) 28 (15.9) 46 (23.0) 156 (19.3)Others 24 (11.3)a 41 (16.3) 32 (21.9) 31 (17.6) 32 (16.0) 134 (16.6)Chi-square, 3 DF (P) 9.52 (0.02)a 5.16 (0.16) 6.24 (0.10) 1.71 (0.64) 2.35 (0.50)

aSignificant difference atP< 0.05.



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should we respond to spiritual distress or

needs for support, that is, what works well?Under this area are the development andevaluation of spiritual care interventions anddetermining the effectiveness of spiritualcare. Understanding patients spiritual needsand preferences in multifaith, multiculturalpopulations was a cross-cutting theme, high-lighting clinicians and researchers recogni-tion of the importance of developing carethat is culturally sensitive and responsive tothe needs of increasingly diverse populations.

Many of the priorities in our findings reflectthose identified in systematic reviews of thespiritual care literature. The 2011 systematicreview for the U.K. Department of Healthhighlights health care professionals confusionand uncertainties in addressing spiritual needsand offering spiritual care or support, suggest-ing that this might be assisted by a frameworkto guide and facilitate theirindividual engage-ment with spiritual issues.29 The review alsouncovered a paucity of evidence about educa-tion and training in spiritual care, echoing

the findings of Sinclair et al.,5 who found

a lack of research into how professionalsdevelop the tacit skills required in spiritualcare. Finally, the authors of the Departmentof Health review emphasize the need toimprove our understanding of how spiritualityis understood and experienced across cultures,as well as to strengthen the evidence baseregarding the effectiveness of spiritual caremodels, particularly community-based. Simi-larly, the recent Cochrane review of spiritualand religious interventions in advanced dis-ease found inconclusive evidence that such in-terventions help patients feel emotionallysupported because of the methodological lim-itations in the trials identified,27 highlightingthe need for robust effectiveness research.

LimitationsThis survey aimed to elicit the views of clini-

cians and researchers, not patients, informalcarers, and other stakeholders. The quantita-tive part of the survey used preselectedresearch areas, which limited respondents

Table 4Content AnalysisdOther Research Priorities (N 971)

Other Research Priorities Total Number Rank

Understanding of spiritual care (who/what/when)a 85 1st Staff education regarding spiritual carea 81 2ndUnderstanding of spiritual needs and spiritual distressa 69 3rd

Spiritual care for nonreligious persons or people from different religionsa

69 3rdConceptualizations or definition of spiritualitya 51 4thModels of spiritual care and spiritual competencies 50 5thIdentification of spiritual needs 38 6thUnderstanding of spiritual needs/care in other culturesa 32 7thStaff attitudes to spiritual care and overcoming staff discomforta 31 8thStaff members own spiritualitya 30 9thQuestions related to spiritual discussions or conversations 25 10thInvestigating the effect(iveness) of spiritual care 23 11thUnderstanding the spiritual needs/care of family members 22 12thThe role of team work in spiritual care 17 13thReligious rituals patients engage in and their attitudes to thema 12 14thDetermining risk factors for spiritual distress 12 14thUnderstanding the spiritual needs/care of children and their parents 11 15thResponding to spiritual needs and evaluating spiritual interventions 10 16thExploring patient preferences with respect to spiritual carea 9 17th

Other theoretical/social/cultural research questions

a

8 18thThe effect of having certain spiritual beliefs, e.g., on resilience, coping a 8 18thDetermining the prevalence of spiritual distress in different populations 7 19thAssessment and measurement of spiritual outcomes 7 19thUnderstanding the spiritual needs/care of persons with intellectual disabilitya 4 20thUnderstanding the spiritual resources that patients draw ona 3 21st Exploring barriers to spiritual care experienced by health care providersa 3 21st List is complete 123Not applicable 309No answer 42Other 41Dont know 18

aResearch questions/priorities not on the original list provided in the survey.



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Table 5Top Five Other Research Priorities and Example Quotations

Top Five Other Research Priorities Example Quotations

1. Understanding of spiritual care(who/what/when)

Clarifying the content of the concept spiritual care and how this kindreligious and non-religious palliative care patients. Researcher, Buddhis

I think spiritual care might be the part least covered. So we need to assand resources are allocated to meet spiritual needs in comparison with phneeds, in different PC settings. Clinical oncologist trained in palliative

Understand more about how spiritual needs and spiritual care provision patients, family carers and health and social care providers, and how theemotional and psychological needs and care provision. Researcher, Pro

2. Staff education regardingspiritual care

One of the barriers to assessment and provision of spiritual care is the care providers. As such I believe research should be focused on assessingfollowing spiritual care education for health care professionals. Demonscrease confidence and skills, and in turn improve patient care should be aPalliative care physician, Protestant, U.K.

I would like to stress the teaching of communication skills of the staff coOnly profound knowledge and experience can lead to good clinical resultheir relatives. Therefore, the staff first should be educated in these mattferences. Palliative care physician, Catholic, Latvia

Training palliative care professionals to pick up patients small cues aboResearcher, Agnostic, Netherlands

3. Understanding of spiritualneeds and distress

Conduct longitudinal studies to understand how patients spiritual needphysician, Muslim, Palestine

Determine differences in spiritual need globally, e.g., transcultural factorfor patients in a multicultural society. TB/HIV physician, Orthodox, Ru

I think I would add exploring the changes the patients would be experimeaning they gave to these changes. When patients life changes and thethemselves with the changes they feel lost, helpless and perceive life meaunderstand their spiritual distress we need to understand it within the coworker, Catholic, Malta


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4. Spiritual care for nonreligiouspeople and people of differentfaiths

I wonder if spiritual care is a universal aspect. Wouldnt it be possible thbetween countries and religions? And would development of group-specResearcher, Protestant, Netherlands

To explore what the great religions say about dying, a life after this life who are dying and explore if they are indeed a help or an obstacle for g

dying. Chaplain/spiritual care provider, Catholic, NetherlandsWith the current cultural shift away from mainstream religions, staff neunderstanding of the area and the range of beliefs and practices that paservice. Psychologist, spiritual, but not religious, Ireland

In my opinion one of the biggest problems is the prejudice in the pallireligious beliefs and that they actually dont know what to do. If you thinfaith, you will try to get the patient out of unhealthy environment . WPalliative care physician, Protestant, Denmark

5. Conceptualizations anddefinitions of spirituality/the spiritual

Something that worries me is the definition of spiritual care. We have mnowadays with religious intolerance and people trying to show that some [.]. Although I do understand that spirituality is not equivalent to religi

emphasised when training professionals, especially amongst groups who Researcher, Catholic, U.K.

To integrate theoretical knowledge from disciplines such as psychology cultural psychology, anthropology and sociology of religion. These areasboth in depth and contextually, for the complexity and diversity that areena. Researcher, Protestant, Norway

There is a need to develop some consensus as to what spirituality is anmodernist (post-modernist) relativist culture. How does modern spirituadying? Chaplain/Spiritual care provider, Protestant, U.K.


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choice of priority; however, the addition of thequalitative component strengthened the study,enabling additional priority areas to be identi-fied. The online survey methodology is usefulto gain the responses of a large number of

interested clinicians and researchers in a rela-tively short period; however, it has limitations.Most importantly, the number of respondentswho received the invitation is unknown, andmany palliative care practitioners at all levelswill have received multiple invitations to partic-ipate; hence, it is not possible to calculate aresponse rate. The study findings, therefore,are likely to be biased toward those who havean interest in spiritual care and wished toparticipate in the survey; this should be takeninto consideration when interpreting the re-sults. The majority of respondents were Chris-

tian (64.5%), European (73.4%), and workedclinically (51.6%); therefore, the study find-ings may not be representative of others work-ing in palliative care. As the survey was inEnglish, this limited respondents to Englishspeakers; however, some responses wereentered in the respondents mother tongue(French, Spanish, Portuguese, Ukrainian,Russian, and Dutch), and these were trans-lated by native speakers known to the authors.

Respondents were asked to indicate their spir-itual/religious beliefs according to a list devel-oped by the authors with input from spiritualcare specialists. However, religious, spiritual,and philosophical beliefs may be delineated

in many ways and may be more fine grainedthan the list suggests (e.g., humanists alsomay be Christians).

Implications for Clinical Practice andResearch

Findings highlight that clinicians and re-searchers working in palliative care believethat there should be further research in spiri-tual care to guide clinical practice and ensurepatients and carers receive high-quality pallia-tive care that includes spiritual care in additionto care in the physical, psychological, and so-cial domains. Areas highlighted as prioritiesin spiritual care research are the developmentand evaluation of conversation models,screening and assessment tools and models,and spiritual care interventions. In movingresearch forward in these areas, it is essentialthat robust and appropriate research method-ologies are used; for example, there is an ur-gent need for well-designed and conductedrandomized controlled trials in this area.27 As

Table 6Content AnalysisdSingle Most Important Research Question (N 971)

Research Question Theme Total Number Rank

Responding to spiritual needs and evaluating spiritual interventions 110 1st Investigating the effect(iveness) of spiritual care 105 2ndUnderstanding of spiritual needs and spiritual distressa 88 3rd

Identification of spiritual needs (screening) 80 4thQuestions related to spiritual discussions or conversations 72 5thModels of spiritual care 67 6thStaff attitudes to spiritual care and overcoming staff discomforta 62 7thAssessment and measurement of spiritual outcomes 57 8thUnderstanding of spiritual care (who/what/when)a 52 9thExploring patient preferences with respect to spiritual carea 40 10thDetermining the prevalence of spiritual distressin different populations 37 11thConceptualizations or definition of spiritualitya 33 12thStaff education regarding spiritual carea 32 13thDetermining risk factors for spiritual distress 28 14thUnderstanding the spiritual needs/care of family members 23 15thTheoretical/social/cultural research questionsa 20 16thStaff members own spiritualitya 19 17thUnderstanding the spiritual resources that patients draw ona 11 18thThe role of team work in spiritual carea 8 19th

Understanding the spiritual needs/care of children and their parents 8 19thThe effect of having certain spiritual beliefs, e.g., on resilience ,copinga 5 20thReligious rituals patients engage in and their attitudes to them a 3 21st Not applicable 13No answer 18Other 32Dont know 112

aResearch questions/priorities not on the original list provided in the survey.



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Table 7Top Five Most Important Research Questions and Example Quotations

Top Five Research Questions Example Quotations

1. Responding to spiritual needs andevaluating spiritual interventions

What are the most effective interventions at the end of life to awithout medicalization of human dying? Chaplain, Catholic,

How do you select the most effective spiritual care intervention mgroups? Palliative care physician, Buddhist, Singapore

I dont think there can be a single question, but Id suggest twspiritual, religious and/or existential concerns impact on patiencourse of end-of-life care? b) In the light of our understanding odelivered by whom is most effective? Researcher, Agnostic, UK

Develop and evaluate spiritual interventions, e.g., pastoral counspecialist spiritual care providers (e.g., physicians, nurses). PalliGermany

2. Investigating the effect(iveness) ofspiritual care

Whether what is being done has made both the patient and cawith themselves. The patient and care provider should be able to

experience peace and maybe even joy during this process. Socireligious, Singapore

Proving efficacy will enhance advocacy for service provision. PCanada

There is urgent need for efficacy data. This is labor intensive wallocation and unless there is efficacy data, it is difficult to ensurphysician, Jewish, Israel

3. Understanding of spiritual needsand spiritual distress

The prevalence and nature of spiritual distress in palliative patienBelgium

To know spiritual needs in each patient. I want to say: to obtain a

the spiritual needs of the patients and his or her caregivers. Psyreligious, Cuba

How do needs for spiritual care change in the course of the illnResearch nurse, Catholic, Norway


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Table 7Continued

Top Five Research Questions Example Quotations

4. Identification of spiritual needs(screening)

How is it possible to determine spiritual needs among palliative most effective interventions to improve spiritual well-being? Nur

Means to identify spiritual distress. GP/Community-based phyFirst, to diagnose spiritual needs (everything in clinical medicinPalliative care physician, Catholic, Latvia

Evaluate screening tools used to identify patients with spiritual Sierra Leone

5. Questions related to spiritualdiscussions or conversations

Can we define a conversation model (e.g., 5 easy, provocative quhealth care to determine if there are risks in coping on a spirituaare? Considering that many professional-patient contacts are shoneeds, this method would have to be easily embedded in converHumanist, Netherlands

Training/implementation/evaluation of conversational modelsPalliative care specialist geriatrician, Catholic, Belgium

Develop and evaluate conversation models for spiritual conversAlthough an assessment tool would give an objective outcome mburdened by long list of questions to rate their spiritual distress. Aand unique depending on their individualized personhood, therresearch into conversation models to allow the patients to choosadhering to assessment tools. Palliative care physician, Protesta


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well as advancing knowledge in the priorityareas identified in this survey, further researchis needed to investigate patients and carerspriorities for research in spiritual care toensure that the research agenda is centeredon the needs of service users and the views ofclinicians and researchers.

ConclusionsThis studyaddsto otherworkestablishing pri-

orities in palliative care research.35e38 Findingsindicate agreement that research in spiritualcare should focus on conversation models,screening and assessment, and spiritual care in-terventions. Knowledge of these priority areascan guide the conduct of rigorous, person-

centered, and culturally sensitive research intospiritual care in palliative care.

Disclosures and AcknowledgmentsThe authors thank all those who completed

the survey and all the organizations that assis-ted with advertising the survey, includingAgora, Fibula, Palliactief, Osterreichische Pal-liativgesellschaft, The Cyprus Anti-Cancer Soci-ety, Czech Society for Palliative Medicine andAssociation of Hospice Palliative Care Pro-

viders, Fed

eration Jalmalv, Greek Society forPediatric Palliative Care and Hellenic Associa-

tion for Pain Control and Palliative Care, IrishAssociation for Palliative Care, FederazioneCure Palliative Onlus and Societa Italiana diCure Palliative, The Malta Hospice Movement,Norwegian Association for Palliative Medicineand Norwegian Palliative Association, TheRomanian Society of Palliatology and Thana-tology, Sociedad Espa~nola de Cuidados Paliati-vos, Svensk Forening for Palliativ Medicin,Swedish Council for Palliative Care, and Ukrai-nian League of Hospice and Palliative Care.

The authors received no funding for thisstudy, which was undertaken as part of theirinvolvement in the EAPC Spiritual Care Task-force, and have no conflicts of interest.

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