Lithuanian University of Health Sciences Nursing and Health Care Department Assessment of patients’ spiritual aspects in clinical practice: available tools and their analysis.

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Lithuanian University of Health Sciences

Nursing and Health Care Department

Assessment of patients’ spiritual aspects in clinical practice:

available tools and their analysis.

Final Master Thesis

Author: LUIS SOLIS GONZALEZ Supervisor: Prof. OLGA RIKLIKIENE

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1. SUMMARY

Luis Solis Gonzalez

Assessment of patients´ spiritual aspects in clinical practice: Available tools and its analysis

Aim: To review the concept of spiritual care in relation to the patients needs, spiritual

struggle, assessment of the patient by the physicians and instruments available and its use.

Tikslas: Persvarstyti dvasinės globos koncepciją, atsižvelgiant į pacientų poreikius, dvasinę

kovą, gydytojo vertinimą, turimus instrumentus ir jų naudojimą.

Objectives: Give the students and medical care professionals insight of the spiritual care of

the patients and its bondage to medicine. The search process will be conducted in different languages including English, Spanish and Lithuanian.

Methods: A primary search was conducted online for the research topic on different

databases such as PUBMED, Embase and Cochrane. A secondary search reviewing the bibliographies was performed to identify additional relevant studies.

Results: This review included many researches, articles and literature writings, from more

than 36 sources. The analysis shows the tools available to supply the spiritual care to the patients. The tools reviewed are usable in the medical practice and rely on solid bases.

Conclusions: The studies appraised for this systematic review were mainly of low-level

evidence, yet some results are significant and others identify areas of future research. Nevertheless, the study is a compact and solid review on the spiritual care and its tools available.

2. CONFLICTS OF INTEREST

The author reports no conflicts of interest.

3. SOURCES OF FUNDING

None.

4. ETHICS COMMITTEE CLEARENCE

Not required.

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5. ABREVIATIONS

WHO: World Health Organization NIA: National Institute on Aging

MMRS: Multidimensional Measure of Religious/Spirituality DSES: Daily Spiritual Experience Scale

FICA: Faith and Belief, Importance, Community, Address in Care

SPIRIT: Spiritual belief system, person spirituality, Integration and Involvement in a

spiritual community, Ritualized practices and restrictions, Implication in medical care, Terminal events planning

PRC: positive religious coping NRC: negative religious coping

6. TERMS

Compassion Is a response of trying to understand and recognize someone else´s suffering.

In such a situation a feeling of love, kindness and urge to help and ease develops in the person that feels compassion. It shouldn’t be mistaken by sympathy which is based on a feeling of pity and not empathy [20].

Healing: Recovering from or transcending suffering. Is in this scenario not oriented to the

materialistic understanding of the word but to the spiritual [21].

End of life issues: period at which the patient regards death as a possible and inevitable

outcome of the disease.

Seeking of meaning: the need of integrating many aspects of ourselves and giving them

value and purpose. “Man is not destroyed by suffering, he is destroyed by suffering without meaning” [15, Frankl VE]. The meaning encompasses many questions that are ultimately directed to the need of understanding of the existence: What is the meaning of life? Does life make any sense? Why are we here?

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Seeking of connection: Communication with the outside of the person. Understanding and

development of the relation with the world, beings, society, nature; and the feeling of being related to them.

Seeking of transcendence: “The need for expanding our being beyond the borders of

common human experience” [16, Rousseu, P.] Our understanding is limited, so is our time and reach compared to the enormous universe. Seeking for transcendence we try to surpass the limits of our senses and human condition, since we can feel the presence of something superior above us and we are just seeing a small part of the picture. Graf Durkheim [17] recognizes 4 means to look for transcendence: nature, art, encounter and religion.

Spiritual needs: World Health Organization (WHO) recognizes physical, psychological and

spiritual needs to the patients [13]. They are true needs, usually different from one person to another, from one religion or culture to another, depending of the vision of spirituality, view of life or existential choices of the person.

Spirituality: A dimension of every human that is focused on finding meaning, purpose and

transcendence in life. Spirituality characterizes the way the person connects with the world, to other people, to nature and to the sacred. [14]

Suffering: State at which the patient feels that his person at some level is in danger of

disappearing and this remains until the moment this threat is not present anymore or the his/her integrity can be restored [18]. “Bodies are in pain, people suffer” [19, Cassel]. Suffering can be related to all the factors that a person considers self: not only the body, but also personality, memory, emotional education, psyche, history, culture, family, personal experiences, beliefs, dreams, fears.

7. INTRODUCTION

Despite for a long time, spirituality and health has been linked, nowadays science point of view has taken over the medicine field to the point that spirituality is questioned, and it is discussed if the therapeutic effects are significant or not [1]. When approaching this topic it might at first come to mind a few questions that could serve as a disclaimer to dig in to such matters:

Are the patients in need of spiritual care? Can we scientifically approach spirituality? Is it legitimate to approach spirituality from medicine perspective? Aren´t there other disciplines more suitable to make this approach? And the list goes on.

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6 In any case medical students, as well as professional doctors, have to be prepared to deal with patients and the spiritual aspects of their health and wellbeing, especially in suffering conditions.

Researchers show that patients as well as their relatives [2, 3], do recur to spirituality and religion in order to face their severe illnesses and wished to be taken in account by the medical staff. The need for spiritual care is referred among different cultures, races and sexes and are demanded to be payed attention by medical staff [4, 5, 6].

A study carried by Saint Vincent's Comprehensive Cancer Centre in New York City, NY with 369 patients showed that most of the patients had spiritual needs. A slight majority thought it would be appropriate to be asked about the matter. Few had their spiritual needs met by the staff. Patients whose spiritual needs were not met reported lower quality and satisfaction with care [6].

In another study 203 family adult inpatients at two hospitals in The United States were interviewed regarding their views on the relationship between religion and health. Many of them expressed positive attitudes toward physician involvement in spiritual issues: 77% said physicians should consider patients' spiritual needs and 37% wanted their physicians to discuss religious beliefs with them more frequently. However, 68% said their physician had never discussed religious beliefs with them [7].

The perception of spiritual distress differs among the individuals. 96% of the patients reported experiencing spiritual pain, but they expressed it in different ways: 1) as an intrapsychic conflict, 2) as interpersonal loss or conflict, or 3) in relation to the divine. And, conversely, the intensity of spiritual pain was correlated with depression (r = 0.43, p < 0.001), but not with physical pain or severity of illness. The intensity of spiritual pain did not vary by age, gender, disease course or religious affiliation. The authors maintain that spiritual pain left not addressed, both impedes recovery and contributes to the overall suffering of the patient [8]. In a study carried on in New England and Texas in US 72% of the oncological patients informed that their spiritual needs were not being satisfied by the medical system [9]. In a subsequent study the same researchers established that when spiritual needs of patients were met by medical staff it had much more satisfactory results than when done by anyone else [10].

Satisfaction of spiritual needs is required in every hospital and every research performed shows a high demand and harm derived from the lack of understanding and incapability of providing it by the medical staff [11, 12].

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7 Relying on the scientific evidence it is safe to assume that medical students should be taught of basic knowledge and understanding of the spiritual needs assessment by applying different measurement tools.

8. AIM AND OBJECTIVES

To explore the spiritual care of the patient and report how to teach it to the students, analyzing the key concepts, the most relevant literature made and explaining the instruments available for assessment of the patient. Review of the instruments available is aimed to help the student to select whichever adjust better to the requirements of the situation.

9. NATURAL COURSE OF SPIRITUAL PROCESS

When considering life, every person understands that death is inevitable. However most of the people are used to live as if death was in a faraway horizon, that is unrelated to them and, in order to overcome worrying, they have removed from their consciousness the awareness of life having an ending.

In such a way the awareness of the end is removed from most of our everyday thoughts. But in the situation of palliative phase of the disease, or when a beloved one dies, the feeling of proximity of the end can make the individual develop a process of seeking for meaning or purpose of life.

Normal process

In that normal process a number of themes can be distinguished that often happen one after another in phases [22]:

• Awareness of finiteness

Once diagnosed for a disease that threatens life or cannot be cured some people panic. Sudden experiences of fear, anxiety, depression and loneliness strike the patient.

• Loss of grip on life

Loss of the previous mechanisms of stability and sense of control. In any case disconnection from normal life can make the patient experience the loss of grip on life.

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• Loss of meaning

Loss of future and the sudden feeling that the time is counted. It makes no sense to make plans nor its realistic to follow up on previous plans. Focus of life usually changes from certain goals to an unexplored and not defined terrain.

• Bereavement process

When the initial reaction of shock diminishes, the awareness of all the things one must let go of, such as loved ones and plans, becomes greater. A bereavement process begins.

• Experience of connectedness

Sometimes the patient may unexpectedly have the feeling of being part of a greater whole. It arises suddenly and cannot be called upon consciously. Such an experience of connectedness may be new for the patient, and therefore difficult to verbalize. Making the patient feel comfortable, not judging and listening carefully is necessary in order to provide good assistance.

• Integration of meaning and experience of connectedness

When the patient has assimilated the short expectancy of life with the meaning, he/she would experience a change of priorities and goals and be more capable of assuming its new state.

The patients assuming the new situation can happen in a lot of different ways, but once they are reconciled with the reality of dying they can focus on living the present moment perhaps retrieving the taste for life or attaining new meanings. Bringing in hope and will for experiencing the life time that is left. Professionals have to acknowledge the importance of patient´s spiritual needs and resolving these phases.

Different responses

Sometimes blockage in the assimilation of all the new and intense events and feelings occurs. The patient may not be able to assume all the changes happening and he might consciously or subconsciously deny and supress the processes. Such behaviour is usually a mechanism of self-defence, an attempt to simulate that he/she still has the control. Then, menace of death is enclosed in the subconscious mind and allows the patient to assimilate everything in small doses, a process that can take weeks or months.

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9 Assimilation does not always happen. Sometimes, mostly if the purpose of the medical treatment is curative, most patients focus on being cured and they banish the threat of approaching death to the subconscious. Even when medical treatment does not have the intention to cure, many patients will focus primarily on dealing with the treatment and it effects. It is not recommended to undermine this mechanism of self- defence until the patient feels ready to step forward.

Absence of struggle does not always indicate denial of the situation. Some people have already developed a system of meaning and spirituality previous to their disease, and do not necessary be at the beginning of the process.

Existential crisis may also be one of the outcomes. Panic, anxiety or depression are common symptoms in cases of facing end of life and can be too intense to allow the patient to move on through the spiritual processes. In such case it is probably beyond the possibilities of a medical student to deal with and exceeds the reach of this work. Existential crisis are more suitable to the fields of psychiatry and clergy.

10. DIAGNOSTIC TOOLS

Following the research of Riley, Perna, Tate et al. (1998) and regarding the types of spiritual experiences of the people, 3 groups can be broadly identified:

1. Religious people with strong belief in religious faith, spiritual wellness and meaning of life.

2. Existential people, that mostly value spiritual wellness, but not religious faith. 3. Non-spiritual people that give little value to spirituality, religiosity or meaning of life. It is worth noticing that the patients from the 3rd_{group were much more distressed because of}

their disease than the ones belonging to the other 2 groups and had worse adaptation time [23].

Detection and evaluation of spiritual needs

Asking upfront a patient which his/her spiritual needs are might probably not the best way to open the conversation. If the patient is not familiarized with many of the terms used in this

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10 jargon and misunderstands the intention we may lose all possibilities to board this kind of topic furtherly. Hence, it is safer to follow a few simple rules that have been studied to detect which is the situation and the spiritual needs of a patient.

Simple open-ended questions were proposed as the best option to reach understanding of the spiritual needs of the patient by Puchalsky (2009). With 3 open-ended questions based on literature review regarding spirituality the doctor can get an idea of what the spiritual status of the patient is. The 3 questions were:

• Is there any particular concern that worries you at this moment?

• Where have you previously found support when facing tough situations?

• Who would you like to be by your side? Who would you like to support you?

Selecting an instrument

Before selecting an instrument, we must consider the following factors: • Evaluation core (religious or spiritual suffering)

• Purpose of evaluation (detection of suffering, evaluation of needs,…) • Modality of evaluation (interview or questionnaire)

• Viability of the evaluation (staff availability, patient awareness, …)

Table 1

Instruments for evaluation of spiritual needs of the patient

Tool Author Purpose/ focus/

subscale (No.)

Time required

RCOPE brief [24] Pargament et al. Two factors:

positive adaptation; negative adaptation/ suffering Short NIA/Fetzer Brief Multidimensional Measure of Fetzer institute and National Institute on

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11 Religious/Spirituality

(MMRS) [25]

Aging (NIA)

DSES [26] Underwood et al Subscales Short

FICA: Spiritual History [27]

Puchalski et al. Brief spiritual story Long

SPIRIT [28] Maugan In Depth interview with guided

questions

Medium (10-15min)

Furtherly each of the tools presented in the table will be analyzed, taking into consideration their practicalities, strengths and weaknesses.

10.1 BRIEF RCOPE

a) Comments on the instrument

It is a 14-item instrument to cope with life threatening and stressful situations. It was generated on the basis of interviews with people that had experienced this kind of situations and is one of the most used measures in the literature. Its supported by many empirical studies [24].

It was developed from a longer version RCOPE, which quickly underwent simplification when understanding that all the items could be resumed in positive and negative. In such a way it is easier and quicker to use while it retains its fundamentals.

b) Practicalities

It is multi-functional tool. The items were designed to inquire about five religious fields —meaning, control, comfort, intimacy, life transformation — and the search for the sacred or spirituality itself. [29]

And two-dimensional, as it recognizes positive religious coping (PRC) and negative religious coping (NRC) with 7 items for each.

It is useful specially for Christians (not any specific Christian church) although it can be adapted for any religion or spiritual view.

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12 In the example attached with the [Appendix 1] it is demonstrated how the instrument should be presented to the patient that is going to be evaluated. Sentences should be given a score from 1 to 4.

c) Strong points

- Briefness

- Helps differentiate the positive from the negative (and harmful) ways of coping with the stressful event.

- Helps understanding the state in which the patient is.

- Studies have good results concerning validity, sensitivity to changes [29]. - Many studies performed.

- Most commonly used method for evaluating religious coping.

d) Weak points

- Have been tested very little on non-Christian patients [30,31]. - Have been tested very little on non-theistic patients.

- Studies have shown that PRC and NRC are not significantly associated one with another.

- Focuses on divine spirituality.

- Briefness doesn’t allow in depth analysis.

10.2 NIA/FETZER SHORT FORM

Fetzer/NIA Brief Multidimensional Measure of Religiousness/Spirituality (MMRS), was developed by the Fetzer institute and the NIA working group, based on large researching processes [32] that are divided in sections. Is a multifaceted instrument useful for any kind of spirituality and religiosity.

One basic fundamental in which the research is grounded is the study of the many ways the religious experience is connected to health. Behavioural, social, psychological, and even directly physiological pathways were considered. [33]

Behavioural mechanisms: since religions promote healthy lifestyle, proved lower

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Social mechanisms: as religions provide social integrative and supportive

communities for their members.

Psychological mechanisms: Studies support that religious individuals are happier

and more satisfied with their lives. This is explained because the religions give strong coherent belief system.

Physiological mechanisms: Stimulation on the neuroendocrine system derived from

psychological wellbeing has been proved to have beneficial consequences including myocardial ischemia, arrhythmias, increased platelet aggregation, suppressed immune response, and elevations in risk factors.

It’s a harder tool to use and offers an in-depth assessment of the spiritual life and condition of the patient.

Each section is meant to explore 12 aspects of the spiritual experience of the patients, namely:

• Daily spiritual experiences • Meaning

• Values • Beliefs • Forgiveness

• Private Religious Practices • Religious/Spiritual Coping • Religious Support • Religious/Spiritual History • Commitment • Organizational Religiousness

•

Religious Preference

For each of them the researchers developed many questions that would, theoretically, assess the development of the patient in each aspect. From them they selected not more than 6 questions for each aspect, to be included in the test.

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- Developed by a large and qualified group of professionals from both Fetzer Institute and National Institute on Aging.

- Includes any kind of spirituality or religious view.

- Because it includes both (spirituality and religiosity) it can collect both facets of the patient even if the patient has combined constructs.

d) Weak Points

- Too many aspects to explore any deeply enough.

- Overlapping between the spirituality and the religious dimensions.

- The extent of the researches performed is too big to be contained in this shot form.

10.3 DSES (DAILY SPIRITUAL EXPERIENCE SCALE)

Was developed through many in depth interviews, carried on by Underwood, to individuals of varied religious views: agnostics, Buddhists, Christians, Hindus, Muslims, Jews and atheists. A simple, yet useful scale that allows the interviewer to get an approach to the strength of the spiritual everyday experience and the attachment to God beliefs of the patient. It is based on the fact that the patient has religious concerns.

It´s a 16-item questionnaire. It aims to measure daily experiences that they have on a daily basis. Specifically directed for not mystical experiences (this is very rare experiences that are directly imbued by not common communication with the divine). The first 15 items of the questionnaire are measured on a 6-point Likert-type scale: many times a day, every day, most days, some days, once in a while, and never or almost never.

When using it is best to make the patient understand that the form includes items which he/she may not have directly experienced and should try to disregard if feeling that had not have those experiences. Some items use the word God. If the word is not the best related to his experience, ask to substitute another idea which calls to mind the divine or holy for him/her. [34]

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15 Example attached in [Appendix 3].

- Adaptable for any religious view.

- Very good consistency and reliability ratios through researches. [35] - Easy to apply and work with

d) Weak Points

- Can be biased by the personal self-requiring, this is: some people are less strict when considering themselves than others thus the self-rating values can be very different.

10.4 SPIRIT

It’s a very popular tool in United States also known as “SPIRITual History”. Its name is a mnemonic for the 6 dimensions of the patient´s spiritual history that is aimed to explore:

S — Spiritual Belief System: trying to identify the spiritual/religious system the

patient is related to (Christian, Buddhist, etc…)

P — Personal Spirituality: some develop their own spiritual structure from their

experiences and their intellect.

I — Integration and Involvement in a Spiritual Community: Identification and

sharing with people in the same spiritual lines is felt by many patients as very enriching and socially healthy; and in many cases influences a lot the life of the patients.

R — Ritualized Practices and Restrictions: Specially in religious patients, there are

specific acting and performances, as well as forbidden things to do. These are usually very important part of the spiritual life of the patient.

I — Implications for Medical Care: All the previous fields can be strongly related to

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T — Terminal Events Planning: Analysing all the information that the physician has

gathered in the previous points, it´s more likely that he will have a broader perspective now to help the patient face the end of life events.

These 6 dimensions cover over 22 items that take only over 10 to 15 minutes to fill or that can be integrated in general interviews over several sessions with the patient.

Example attached in [Appendix 4]

- The biggest advantage of this tool is the amount of questions related to the disease and the way that the religious beliefs can affect them.

10.5 FICA

Another very popular tool to take spiritual history. It was originally designed for primary healthcare, to take spiritual history of the patient but it´s been proved effective to use in any group of patients. Due to its relative simplicity it´s use is very extended. Was developed by Puchalski (2002) and a group of primary care professionals [36].

The acronym stands for the fields of spirituality they are meant to explore:

F - Faith and Belief I - Importance C - Community A - Address in Care

The interviewer has to be prepared for a chat with the patient. The items are open-questions and the interviewer has flexibility to make the interview superficial or very deep and can stress the parts that are more important or necessary for each patient.

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- Open questions make it easier to adapt to the patients’ needs. - Allows flexibility.

- Tool designed for general practitioners.

d) Weak Points

- Requires some experience to use and knowledge. - Can take very long.

- The instrument is midway between a survey with fixed questions and an open conversation.

- Requires the patient to be able to tell his/ her thoughts in words.

11. CONCLUSIONS

For the better assessment of spiritual needs of patients, valid and reliable tools are necessary. Literature provides high number of tools to measure spirituality aspects of the patients and professionals have to choose the most suitable, in regard to the instrument applicability, practical aspects of use, strengths and weaknesses of the assessment.

Spiritual care is not exclusive for any medical area but it has proven to be especially useful in the fields of palliative care, oncology, geriatrics or psychiatry but any patient in any speciality may show need for spiritual care.

When approaching this field there is a key point to have in account. The better the physician know himself, the more he/she has reflected and studied on these topics, the more empathic qualities has, the more sensitive person; then the best this physician will be ready to match the patient´s spiritual requirements. Knowledge in the field of humanities is be valuable for this reason too. Thus the readiness of the professional should be induced from the beginning. Students undergraduate and postgraduate should be encouraged to dig this area.

The medical students have to be introduced to the spiritual aspect of patient care in order to be prepared to recognise patients’ spiritual needs, to assess them and to meet working in a multidisciplinary team. They need to know about the jargon used and the tools available. The physician has to be open-minded and respectful, and, if possible to be mentally prepared for spiritual conversations. Thus, if the future doctors are warned about these problems they are less likely to disattend the suffering of the patients, destroy the bonds of trust or

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18 misunderstand the needs of patients. Inclusion of this knowledge should be considered in the medical schools.

From the instruments reviewed, the following conclusions are taken:

- RCOPE brief is useful in discriminating positive from negative spiritual dimensions of the stressful events.

- MMRS is the broadest and most difficult tool to use.

- DSES is useful to assess the ordinary experiences related to spiritual life, specifically not including the so-called mystical experiences.

- SPIRIT is a very simple yet complete tool that can give a general and broad idea of the spiritual or religious view of the patient and is oriented to deal with end of life (palliative) situations.

- FICA is useful to make an open interview in which the patient will explain openly his thoughts on spiritual life.

- FICA was originally designed by and for general practitioners, hence, even though it is useful for other fields it specially shines for primary care.

- RCOPE brief and DSES are very quick and can be performed in less than 10 minutes. - MMRS and SPIRIT offer an in depth yet not too time-consuming approach to the

patient´s spiritual life.

There are many barriers when coming to touch spiritual fields. Specially in western culture nowadays the topic has become somehow a taboo. Other barriers include the physician´s particular thoughts, lack of education in the matter or the patient´s lack of recognition. Instruments not only allow to take some notes on the spiritual life of the patients, they break those barriers making the spiritual dimension accessible to health care professional. Spiritual needs should be watched over as much as physical or emotional.

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12. REFERENCES

[1] Puchalski et al.: Improving the Spiritual Dimension of Whole Person Care: Reaching National and International Consensus. Journal of Palliative Medicine. 2014. 642–656 [2] Kim Y, Wellisch DK, Spillers RL, et al.: Psychological distress of female cancer

caregivers: effects of type of cancer and caregivers' spirituality. Support Care Cancer 15 (12): 1367-74, 2007.

[3] Whitford HS, Olver IN, Peterson MJ: Spirituality as a core domain in the assessment of quality of life in oncology. Psychooncology 17 (11): 1121-8, 2008.

[4] Taleghani F, Yekta ZP, Nasrabadi AN: Coping with breast cancer in newly diagnosed Iranian women. J Adv Nurs 54 (3): 265-72; discussion 272-3, 2006.

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[6] Astrow AB, Wexler A, Texeira K, et al.: Is failure to meet spiritual needs associated with cancer patients' perceptions of quality of care and their satisfaction with care? J Clin Oncol 25 (36): 5753-7, 2007.

[7] King DE, Bushwick B: Beliefs and attitudes of hospital inpatients about faith healing and prayer. J Fam Pract 39 (4): 349-52, 1994.

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[9] Balboni TA, Vanderwerker LC, Block SD, et al.: Religiousness and spiritual support among advanced cancer patients and associations with end-of-life treatment preferences and quality of life. J Clin Oncol 25 (5): 555-60, 2007.

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20 [13] Cecilia Sepúlveda, MD, Amanda Marlin, MPH, Tokuo Yoshida, MD, and.

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[15] Frankl VE. Man's Search for Meaning. New York: Simon and Schuster; 1984. [16] Rousseau, Paul. La spiritualité et le patient en fin de vie. Classic Papers, Suppl.

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[17] Dürckheim, K.G.. Experimentar la trascendencia. Barcelona 1992: Ed. Luciérnaga.

[18] Casell E.J. (1982). The nature of suffering and the goals in medicine. N. Engl. J. Med.; 106: 639-645.

[19] Cassell EJ. (2004). The Nature of Suffering and the Goals of Medicine. New York: Oxford Univ. Pr; 2004: 36-41

[20] Sinclair, Shane et al. (2017). Sympathy, empathy, and compassion: A grounded theory study of palliative care patients’ understandings, experiences, and preferences. 2017 May; 31(5): 437–447.

[21] Egnew, Th. R. The meaning of healing: transcending the suffering. Annals of Family Medicine, 3:255-262., 2005

[22] Spiritual care Nation-wide guideline, Version: 1.0 Agora spiritual care guideline working group. 2014. Pag 8-11

[23] Riley BB, Perna R, Tate DG, et al.: Types of spiritual well-being among persons with chronic illness: their relation to various forms of quality of life. Arch Phys Med Rehabil 79 (3): 258-64, 1998

[24] Pargament KI, Smith BW, Koenig HG, et al.: Patterns of positive and negative religious coping with major life stressors. J Sci Study Relig 37 (4): 710-24, 1998.

[25] Puchalski C, Romer AL: Taking a spiritual history allows clinicians to understand patients more fully. J Palliat Med 3(1): 129-137, 2000.

[26] Underwood, L. G. & Teresi, J. (2002). The Daily Spiritual Experience Scale: Development, theoretical description, reliability, exploratory factor analysis, and preliminary construct validity using health related data. Annals of Behavioral Medicine, 24, 22-33

[27] Multidimensional Measurement of Religiousness/Spirituality for Use in Health Research: A Report of the Fetzer Institute/National Institute on Aging Working Group. Kalamazoo, Mich: Fetzer Institute, 1999.

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21 [29] Kenneth Pargament *_{, Margaret Feuille and Donna Burdzy.: The Brief}

RCOPE: Current Psychometric Status of a Short Measure of Religious Coping. 2011. 51-76.

[30] Z.H. Khan, and P.J. Watson. “Construction of the Pakistani Religious Coping Practices Scale: Correlations with religious coping, religious orientation, and reactions to stress among Muslim university students.” Int. J. Psychol. Rel. 16 (2006): 101–112.

[31] A.W. Braam, A.C. Schrier, W.C. Tuinebreijer, A.T.F. Beekman, J.J.M. Dekker, and M.A.S. de Wit. “Religious coping and depression in multicultural Amsterdam: A comparison between native Dutch citizens and Turkish, Moroccan, and Surinamese/Antillean migrants.” J. Affect Disord. 125 (2010): 269–278

[32] Fetzer Institute, National Institute on Aging Working Group: Multidimensional Measurement of Religiousness, Spirituality for Use in Health Research. A Report of a National Working Group. Supported by the Fetzer Institute in Collaboration with the National Institute on Aging. Kalamazoo, MI: Fetzer Institute, 2003

[33] Sloan RP, Bagiella E, Powell T: Religion, spirituality, and medicine. Lancet. 1999, 353:664–667.

[34] Underwood, L. G. & Teresi, J. (2002). The Daily Spiritual Experience Scale: Development, theoretical description, reliability, exploratory factor analysis, and preliminary construct validity using health related data. Annals of Behavioral Medicine, 24, 22-33

[35] Lynn G. Underwood, Ph.D. Fetzer Institute Jeanne A. Teresi, Ed.D., Ph.D. Hebrew Home for the Aged at Riverdale and Columbia University Stroud Center. “The Daily Spiritual Experience Scale: Development, Theoretical Description, Reliability, Exploratory Factor Analysis, and Preliminary Construct Validity Using Health-Related Data” 2002, 22-33.

[36] Sulmasy DP. A biopsychosocial-spiritual model for the care of patients at the end of life. Gerontologist. 2002; 42(Spec No 3): 24-33.

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Appendix 1 Brief RCOPE [Pargament et al.]

The following sentences are possible ways to deal with negative events. Please answer with a number from 1 to 4 using the choices below to address to which extent you applied these behaviours to cope with the negative event. Rate all of the answers independently one from another and highlight the answer that applies to you the best.

1 – not at all 2 – somewhat 3 – quite a bit 4 – a great deal (+)

Positive Religious Coping Subscale Items

1. Looked for a stronger connection with God. 2. Sought God's love and care.

3. Sought help from God in letting go of my anger. 4. Tried to put my plans into action together with God.

5. Tried to see how God might be trying to strengthen me in this situation.

6. Asked forgiveness for my sins.

7. Focused on religion to stop worrying about my problems.

Negative Religious Coping Subscale Items

8. Wondered whether God had abandoned me. 9. Felt punished by God for my lack of devotion. 10. Wondered what I did for God to punish me. 11. Questioned God's love for me.

12. Wondered whether my church had abandoned me. 13. Decided the devil made this happen.

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Appendix 2 NIA/Fetzer Brief Multidimensional Measure of

Religious/Spirituality (MMRS)

Domain Testable relevance to health

Propose wording (based on the study in 1998)

Affiliation Denomination-specific proscriptions for lifestyle risk factors: alcohol, diet, smoking

Are you a member of any religious congregation?

(If yes) Which?

(If not) Do you feel close to any religion?

History Life-changing experience fostering behaviour change Exposure to psychophysical religious/spiritual states

Did you ever have a religious or spiritual experience that changed your life?

Public Practices Exposure to psychophysical religious/spiritual states Conformity to risk-reducing behaviours Exposure to social networks and sources of support

How often do you attend religious services? How often to you take part in the activities or organizations of a church or place of worship other than attending services?

Private Practices Exposure to psychophysical religious/spiritual states

How often do you pray privately in places other than at church or synagogue? Within your religious or spiritual tradition, how often do you meditate? How often have you read the Bible in the last year?

Support Access to instrumental assistance and

expression of caring

If you were ill, how much would the people in your congregation help you out?

If you had a problem or were faced with a difficult situation, how much comfort would

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give you? How often do the people in your congregation make too many demands on you? How often are the people in your

congregation critical of you and the things you do?

Coping Reduction of negative impact of stressful life events

Think about how you try to understand and deal with major problems in your life. To what extent is each of the following involved in the way you cope: I think about how my life is part of a larger spiritual force. I work together with God as partners. I look to God for

strength, support, guidance. I feel that God is punishing me for my sins or lack of

spirituality. I wonder whether God has abandoned me. I try to make sense of the situation and decide what to do without relying on God.

Beliefs and Values

Opportunities for social comparison promote personal well-being Reduction of stress through provision of hope

I believe in a God who watches over me. I feel a deep sense of responsibility for reducing pain and suffering in the world. Do you believe there is life after death? I try hard to carry my religious beliefs over into all my other dealings in life.

Commitment Enhancement of

well-being through concern for others

During the last year how much money did you and the other family members in your

household contribute to each of the following: Your local congregation? Other religious organizations, programs, causes?

Nonreligious charities, organizations, causes? Were any of your contributions involved in the arts, culture, or humanities?

Forgiveness Reduction of stress

through resolution of

Because of my religious or spiritual beliefs: I have forgiven myself for things that I have

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me. I know that God forgives me.

Spiritual Experience Exposure to psychophysical religious/spiritual states

The following questions deal with possible spiritual experiences. To what extent can you say you experience the following: I feel God’s presence. I find strength and comfort in my religion. I feel deep inner peace or harmony. I desire to be closer to or in union with God. I feel God’s love for me, directly or through others. I am spiritually touched by the beauty of creation.

Religious Intensity

Indicator of feelings of self-worth

To what extent do you consider yourself a religious person? To what extent do you consider yourself a spiritual person?

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Appendix 3 DSES (DAILY SPIRITUAL EXPERIENCE SCALE)

[Underwood]

The first 15 items of the questionnaire are measured on a 6-point Likert-type scale: many times a day, every day, most days, some days, once in a while, and never or almost never. Item 16 is measured on a 4-point scale: Not Close at All, Somewhat Close, Very Close, As Close as Possible.

Make your answers as true FOR YOU as you can. Score the answer that best applies to you.

1- Many times a day, 2- Everyday, 3- Most days, 4- Some days, 5- Once in a while, 6- Never

Sentence Score

I feel God´s presence

I experience connection to all life

During worship, or at other times when connecting with god, I feel joy, which lift me out of daily concerns

I find strength in my religion or spirituality I find comfort in my religion or spirituality I feel deep inner peace or harmony

I ask for God´s help in the midst of a daily activities I feel God´s love for me directly

I feel God´s love for me through others

I am spiritually touched by the beauty of creation I feel thankful for my blessings

I feel selfless caring for others

I accept others even when they do things that I think are wrong

I desire to be closer to God or in unionwith him

Score from 1 to 4 the next question, being 1 the furthest and 4 the closest possible

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Appendix 4 SPIRIT [Maugans]

S - Spiritual belief System

What is your formal religious affiliation? Name or describe your spiritual belief system.

P- Personal spirituality Escribe the believes and practices of your religion or spiritual system that you personally accept.

Describe the believes or practices you do not accept.

I - Integration with spiritual community

Do you belong to any spiritual or religious group or community? What is your position? Role? What importance does this group have to you? Is it source of support? In what ways?

R – Ritualized practises and restrictions

Are there specific practices that you carry out as part of your religion/spirituality? Are there

certain lifestyle activities or practices that your religion/spirituality encourages or forbids? Do you comply? What significance do this practices and restrictions have to you?

I – Implications or medical care

What aspects of your religion/spirituality would you like me keep in mind as I care for you? Would you like to discuss religious or spiritual implications of health care? What knowledge or understanding could strengthen our relationship as physician and patient? Are there any barriers to our relationship based on religious or spiritual issues?

T – Terminal events planning

As we plan for your care near the end of life how does your faith impact on your decisions? Are there particular aspects of care that you wished to forgo witheld because of your faith?

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Appendix 5 FICA [Puchalski et al]

F: Faith, belief, meaning

• Do you consider yourself spiritual or religious?

• Do you have spiritual beliefs that help you cope with stress?

• What gives your life meaning?

I: Importance and Influence

• What importance does your faith or belief have in your life?

• On a scale of 0 (not important) to 5 (very important), how would you rate the importance of faith/belief in your life?

• Have your beliefs influenced you in how you handle stress?

• What role do your beliefs play in your healthcare decision making?

C: Community

• Are you a part of a spiritual of religious community?

• Is this of support to you and how?

• Is there a group of people you really love or who are important to you?

A: Address in care

How would you like your healthcare provider to use this information about your spirituality as they care for you?

Lithuanian University of Health Sciences Nursing and Health Care Department Assessment of patients’ spiritual aspects in clinical practice: available tools and their analysis.