Spiritual Well-being in Veterans with Spinal Cord

Injury/DisordersNina Tilka, Ph.D.; Rehabilitation Psychology

Postdoctoral Fellow

Sarah Brindle, Ph.D., Staff Psychologist

Linda Mona, Ph.D., Staff Psychologist

Spinal Cord Injury/Disorders Service,

Tibor Rubin VA Medical Center, Long Beach, CA1

DisclosuresPresenters have no financial or non-financial interest to disclose.

PESG staff, PVA staff, and planning/review committee members have no financial or non-financial interest to disclose.

This continuing education activity is managed and accredited by Professional Education Services Group in cooperation with Paralyzed Veterans of America. PESG, PVA, and all accrediting organization do not support or endorse any product or service mentioned in this activity. 2

Learning Outcomes

• Describe the relationship between spirituality and well-being within the context of disability and describe potential spiritual needs for Veterans with SCI/D.

• Recognize the various aspects of spiritual struggle and positive religious/spiritual coping in Veterans with SCI.

• Identify clinical approaches to address spiritual issues and needs in clinical work with SCI Veterans.

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CE/CME Credit

If you would like to receive continuing education credit for this activity, please visit:

https://pva.cds.pesgce.com

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Outline

• Discuss and review literature on spirituality and well-being in the context of SCI/D

• Share narratives from biweekly spirituality psychotherapy group

• Explore qualitative data from Veterans with SCI/D

• Offer specific suggestions for providers 5

What does “I’m praying for you”

really mean?

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Awareness of potential spiritual themes

I’m blessed by this disability

This is punishment for sin or wrong-doing

God won’t give me more than I can handle

If I pray hard enough I will walk again

Family praying for miracle, patient doing OK with situation

God has abandoned me

I don’t know if I believe in God anymore

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Barriers to Spiritual Expression

Transportation to religious services

Accessibility of church buildings, altar, different parts

of church

Prayer: folding hands, getting down on knees to pray

Complex care needs

Chronic pain

Negative cultural views of disability

Limited views of others as to the role of a disabled person within a church or spiritual community

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Defining Terms: Spirituality

A process through which one seeks to discover, hold on to, and transform whatever they hold sacred in life

Attitudes, values, and practices

What motivates at the deepest level

Influences thoughts and behaviors

Helps one find a true and useful place in one’s community, culture, and the world

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Pargament, 1999; Taylor, 2001

Defining Terms (cont.)

Religion:

A set or system of traditions, practices, doctrines, beliefs, moral codes generally shared by a faith-based group

Spiritual well-being:

A sense of peace and contentment regarding aspects of spirituality

Spiritual distress or religious/spiritual (R/S) struggle:

Aspect of R/S becomes a focus of negative thoughts or emotions, concern, or conflict 10

Hill et al., 2000; Exline, 2014

Why is spirituality/religion important to talk about?

• Culturally competent care

• Patient-centered care and values

• Many veterans identify as being religious or spiritual

• As many as 91% of military service members identity as Christian (Pew Research Center, 2018).

• Whole Health Initiative

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Whole Health initiative: VHA effort to affect cultural transformation towards a different model of health care delivery

Whole Health Defined: Whole Health is patient-centered care that affirms the importance of the relationship and partnership between patients and their community of providers. The focus is on empowering the self-healing mechanisms within the whole person while co-creating a personalized, proactive, patient-driven experience.

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The Circle of HealthSpirit and Soul (“Growing and Connecting”): A sense of meaning and purpose in life and a connection to something larger than yourself.

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Spirituality & Adjustment to SCI/D

Spirituality is related to positive outcomes (e.g., positive adjustment, hope, life satisfaction, quality of life, better mental health outcomes, and resilience)

Spirituality is not always a positive aspect following SCI

Spiritual distress related to higher levels of pain, depression, and decreased satisfaction with life

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see Jones, Simpson, Briggs, & Dorsett, 2016; Matheis, Tulsky, & Matheis, 2006; White, Driver, & Warren, 2010; Chen & Boore, 2008; Johnstone & Yoon, 2009; Siddall, McIndoe, Austin, & Wrigley, 2017

Spirituality & Disability

McColl et al., 200015

Qualitative data used to develop a working model for spirituality following the onset of disability

Spirituality involves three types of relationships: self, others, and supreme power.

Five themes emerged within each of these relationships Awareness Closeness Trust Purpose Vulnerability

Disability, Faith, and the Church: Book ReviewCourtney Wilder, Ph.D.

Religious response to disability must balance the realities that

disability is common and also deeply stigmatized

Disability theology is based on a theology of liberation of a religiously marginalized group.

The Bible contains significant references to and representation

of disability.

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Disability, Faith, and the Church: Book Review, cont.

Christian scripture can be used to marginalize OR to affirm equality

In religious contexts, people with disabilities are either “divinely blessed or damned: the defiled evildoer or spiritual superhero”, not simply unique human beings.

Every human being is created in the image of God and is a beloved child of God

Perhaps healing narratives in the Bible refer to a healing of salvation, rather than a physical “cure”

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Therapy Group: Building Spiritual Strength

History of group

Offshoot of Whole Health Training

Building Spiritual Strength workshop (manualized group tx) for mental health professionals in the VA (J. Irene Harris, Ph.D.; Minneapolis VAMC)

Continuation per patient interest

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Group Format

6-12 patient attending group (all identify as Christian)

Focus on spiritual themes: faith, prayer, hope, forgiveness, patience, love, resilience, disability and faith

Focus on strengthening individual beliefs, providing support to other Veterans, connecting faith to psychological health

Each group session has meditation exercise and closing prayer (some collectively written by group)

Essentially a psychology coping skills group focused on utilizing faith as primary strategy and lens for coping

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Personal Statements I believe our sessions have given me another tool, so to

speak, on coping with my injuries. It has also brought me back to my faith which I wasn’t practicing . These sessions also open my eyes and heart to others and how they view God. --John, age 77, C4 ASIA D SCI

I get so excited for the group, I can hardly wait for 2 weeks to go by. The group has helped me open up about myself and the Lord. It helps me with existing and managing my life, including the physical part of it. In thinking about the group, I see it like a ruler, where we grow inch by inch in faith by hearing other people’s opinions and ideas. --Mort, age 75, C5 ASIA D SCI 20

Personal Statements, cont.

I can listen to other people’s perspectives. People can relate to your problems because they understand SCI. It shows that people really want to be there because it takes so long to get ready to come to an appointment with getting up, getting your care, you really have to want to be there.

--Simon, age 48, C5 ASIA B SCI

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Observations of this Spiritual Community

Many faith backgrounds represented Safe space to openly talk with other SCI veterans

about matters of faith within therapeutic structure Comfort in discussing disability, support for

SCI-related issues Openness to religious differences A place to “have church”: For where two or three are gathered together in My name, I am there in the midst of them.” (Matthew 18:19–20)

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Research study: Spiritual Well-being in SCI/D Veterans

IRB approved study using both quantitative and qualitative methods

15 male Veterans recruited from the SCI/D Service at VA Long Beach

Semi-structured qualitative interview where they were asked about their spiritual development in relation to SCI/D and disability.

Spiritual History

Injury and Rehab Experience

Post-injury Spirituality 23

Sample Demographics

Race/ethnicity: 47% African American, 27% Caucasian, 20% Latino,

Education: All completed high school, ten had some college

Religious affiliation: 33% Catholic, 27% Baptist, 13% Non-denominational, 13% Protestant, 7% Christian, 7% No affiliation

Average time since injury: 23.7 years (Range = 3-48)

Level of injury: 67% quadriplegia, 33% paraplegia

Mobility: 20% Manual WC, 60% Power WC, 27% Ambulate with assistive device

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Quantitative ResultsMeasure Mean (SD) Classification

Spiritual Health (Spiritual Well-being Scale) 100.2 (15.2) High

Religious Well-being Subscale 51.5 (8.7) High

Existential Well-being Subscale 48.7 (7.3) High

Brief RCOPE

Positive Religious Coping Subscale 20.3 (5.4) High

Negative Religious Coping Subscale 10.5 (4.4) Medium

Depression (DASS-21) 2.2 Normal (0-7)

Anxiety (DASS-21) 3.4 Normal (0-11)

Stress (DASS-21) 3.6 Mild (0-13)

Satisfaction with Life (Personal Well-being Index: 5th Edition)

78.1 (13.3) High

Spiritual Satisfaction item 8.6 (1.8) High25

Themes

Spiritual HistoryReligious backgroundHistory of spiritual struggles

Injury and RehabLow Spiritual Needs during RehabAdequate Spiritual SupportFlexibility

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Theme: Low Spiritual Needs in Rehab

10 participants reported not thinking about or seeking God during rehab.

I wasn’t pissed off at God or angry with God. I wasn’t thankful or anything. All my mind was – I was just thinking at the beginning part, how was I going to cope with this?

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Theme: Adequate Spiritual Support

All participants felt that they had some form of spiritual support during rehab, and all but one stated that it was adequate 5 mentioned family members

4 noted church members or leaders

10 were offered support by chaplains

4 reported that they attended church services (or AA meeting) at the VA

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Theme: FlexibilityFinding another way of thinking about rehab and living with SCI [My spirituality] just made me believe that I can do things

because at one point I didn’t think I could do anything… It’s not easy being in a chair or when you walk you have to have a walker because you think you’re going to fall all the time, but I try to put that out of my head and start praying.

I thought I was going to live looking out the window of my hospital for the rest of my life not able to do anything. As I found out I can do that. I can do that. You mean I still can do that?

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Themes

Post-Injury SpiritualitySlowing down & Reconnecting with God

and Others

Purpose to Help Others

Barriers to Spiritual Practice

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Theme: Slowing Down & Reconnecting

God allowed this to slow the person down or put them on a different path

Right now I’m able to get up in the morning and take this leg and stretch it over my head for 10 minutes. And when I do I pray to God and pray for people in my life. You know and give God all the glory. I meditate and let him speak to me. He tells you in his soft ways if you slow down and listen to him.

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Theme: Slowing Down & Reconnecting, cont.

Right now, I have my own bedroom and my wife… we don’t sleep together anymore. So I’m alone at night. Or like because she goes to singing or one of her writing classes or whatever. I’m alone by myself. So I spend a lot of time talking to God now and I don’t know it’s for me very rewarding you know the life I have now. And I got that because of (motions toward his body) the situation I’m in. God gave me that.

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Theme: Purpose to Help Others

One specific purpose that participants mentioned was helping others.

I know that I’m here to help others right now…Like I said God put me here for a reason. That’s part of why I’m here is for that.

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Discussion

Aimed to identify spiritual needs or concerns for this population that could ultimately improve patient care

This was a religious population who reported R/S struggles prior to SCI/D

Found that spirituality may not be the priority during rehab

Important to help identify immediate spiritual needs of SCI rehab patients.

Do they feel they have adequate support?

Is there anything else that might help in addition to what they already have?

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Spiritual Assessment Resources

Preliminary Spiritual and Religious Assessment Questionnaire

Royal Free Interview for Spiritual and Religious Beliefs, Self-Report Version

Spirituality Index of Well-Being

Duke Religion Index

Religious and Spiritual Struggles Scale

Brief RCOPE

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Clinical Applications

Whose job is it?

Psychology, Social Work, Nursing, Chaplain

Psychology assessment (initial eval, annual eval) should include question about religion/spirituality

“How important is religion or spirituality to you?”

What if you as the provider are NOT religious or spiritual?

Similar to other diversity issues

Seek supervision, reading, consultation

Refer patient to other provider for more spiritually-focused work, if needed 36

Clinical Applications

What if you as the provider ARE religious or spiritual? Self-monitoring to keep focus on patient’s beliefs, not

your own Seek mentors who provide faith-focused clinical

services Is it appropriate to pray with a patient?

Controversial issue in hospital settings where boundaries between patients and staff are different

Well-meaning staff with no training in faith-based interventions

Unsolicited prayer vs. patient asking to pray with provider

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Clinical Applications

• If religious/spiritual, open the dialogue (if possible and desired, include family or spiritual community)

• Possible “spiritual” and nontraditional interventions

• Meditation

• Forgiveness protocols

• Faith-based counseling from a faith leader or other trained professional

• Narrative therapy focused on spiritual development

• Bibliotherapy (scripture, other spiritual reading) chosen by the patient

• Focused prayer outside of session38

References Chen, H. Y., & Boore, J. R. (2008). Living with a spinal cord injury: a grounded theory approach.

Journal of Clinical Nursing, 17(5a), 116-124.

Dijkers, M. P. (2005). Quality of life of individuals with spinal cord injury: a review of conceptualization, measurement, and research findings. Journal of Rehabilitation Research and Development, 42(3), 87-95

Exline, J. J., Pargament, K. I., Grubbs, J. B., & Yali, A. M. (2014). The Religious and Spiritual Struggles Scale: Development and initial validation. Psychology of Religion and Spirituality, 6(3), 208-222.

Hill, P. C., Pargament, K. I., Hood, R. W., McCullough, J. M. E., Swyers, J. P., Larson, D. B., & Zinnbauer, B. J. (2000). Conceptualizing religion and spirituality: Points of commonality, points of departure. Journal for the Theory of Social Behaviour, 30(1), 51-77.

Johnstone, B., & Yoon, D. P. (2009). Relationships between the Brief Multidimensional Measure of Religiousness/Spirituality and health outcomes for a heterogeneous rehabilitation population. Rehabilitation Psychology, 54(4), 422-435.

Jones, K., Simpson, G. K., Briggs, L., & Dorsett, P. (2016). Does spirituality facilitate adjustment and resilience among individuals and families after SCI?. Disability And Rehabilitation: An International, Multidisciplinary Journal, 38(10), 921-935. doi:10.3109/09638288.2015.1066884

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References Matheis, E. N., Tulsky, D. S., & Matheis, R. J. (2006). The relation between spirituality and

quality of life among individuals with spinal cord injury. Rehabilitation Psychology, 51(3), 265-271.

McColl, M. A., Arnold, R., Charlifue, S., Glass, C., Savic, G., & Frankel, H. (2003). Aging, spinal cord injury, and quality of life: structural relationships. Archives of Physical Medicine and Rehabilitation, 84(8), 1137-1144.

Pargament, K. I. (1999). The psychology of religion and spirituality? Yes and no. The International Journal for the Psychology of Religion, 9(1), 3-16.

Siddall, P. J., McIndoe, L., Austin, P., & Wrigley, P. J. (2017). The impact of pain on spiritual well-being in people with a spinal cord injury. Spinal Cord, 55(1), 105-111.

Taylor, E. J. (2001, August). Spirituality, culture, and cancer care. In Seminars in oncology nursing (Vol. 17, No. 3, pp. 197-205). WB Saunders.

White, B., Driver, S., & Warren, A. M. (2010). Resilience and indicators of adjustment during rehabilitation from a spinal cord injury. Rehabilitation Psychology, 55(1), 23-32.

Wilson, C. S., Forchheimer, M., Heinemann, A. W., Warren, A. M., & McCullumsmith, C. (2017). Assessment of the relationship of spiritual well-being to depression and quality of life for persons with spinal cord injury. Disability and Rehabilitation, 39(5), 491-496.

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Thank you!

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