The Journey Through Spiritual Crisis

1. The Journey Through Spiritual Crisis Helping Children and Families Find Hope Presenters: Margo Richardson, Chaplain; Ann Romanczuk, Chaplain; Suzanne Owens-Pike, Lead Chaplain at HCMC

2. HCMC Pediatric TraumaticBrain Injury Program Medical Co-directors: Andrew Kiragu, MD Armantina Espinosa, MD Program Coordinator/Social Services: Kary Lehman, LGSW 612-873-2680 Specialists: audiologist, chaplain, child life, dietician, interpreter, neuropsychologist, neurosurgeon, opthamalogist, intensivist, neurologist, nurses, occupational therapist, resident physicians, physical therapists, social worker, speech language pathologist

3. The Obstacle Course • Coming Apart • Waiting and Hoping • Repairing • Resilience

4. I. Coming Apart

5. Traumatic Reactions Family • Overwhelming fear and anxiety crying, screaming, pleading talking, running, unfocused • Anger, confusion, denial blaming, controlling, distrusting • Shutting down and withdrawal

6. Spiritual Agony • Why is God allowing this to happen? • Why am I being punished? • Will God answer my prayer to heal my child? • Will God punish the person who did this? • What did I do to cause this? If only I had . . . Can things be put right again?

7. Helpingthe family in crisis • Physical – offer presence, help with phoning, water, chairs, clothing, tissues • Emotional – “I will help you get through this.” Non-anxious, quiet presence that reassures • Mental – listen to and normalize their experience, provide information, get them answers to their questions about loved one’s condition • Spiritual/Religious – offer prayer if family desires, ritual items of meaning, offer to phone their faith leader

8. Developmental Stagesand Spirituality

9. II. Waiting and Hoping

10. “We love you!You are ourprecious child!”

11. Stages of Crisis Coping Old Normal New Normal (Nieuwenhuizen, 2008)

12. Decision-Making • “We’re not sure what will happen when we extubate him. Do you want us to re-intubate him if that happens?” • “We can’t wean her off the vent. She will need a tracheostomy and a peg for tube feeding. We need your consent.” • “We predict he will have deficits.”

13. “We will do whateverit takes to get our son back.”

14. Guilt and Forgiveness • “I can’t remember, but maybe it was my fault.” Forgiveness of self • Letting go of blame Forgiveness of others

15. III. Repairing:Spiritual Concepts • Relationship to Self Hope Faith Purpose in Life Strength Meaning in Life Idealism Part of Self that is Inviolable From McColl et al, “Spiritual Issues Associated with Traumatic-Onset Disability.” In Disability and Rehabilitation, 2000

16. Spiritual Concepts • Relationship to others and the world Tolerance for others Unity with others Sense of belonging Sacredness of life

17. Spiritual Concepts • Relationship to Greater Power Unconditional love Trust Transcendence Belief or faith that one is not alone Spiritual practices

18. Integration Greater Power Others Self

19. Spirituality and Disabilityfrom McColl, et al

20. Ongoing Struggles • Grief “partial death” & prolonged mourning • Relationships accepting the new me; burying the old me • Others’ ignorance and prejudice bullying at school (Zinner, 1997)

21. The Will to Meaning • Broken in an uncaring world? isolation giving up no solutions • I will survive! faith spiritual coping making a way

22. IV. Resilience

23. Hope • The expectation of Joy (there’s a pony in here somewhere) • Optimism (good things can happen; the future is open)

24. Agency • “I’ve got the power!” (Snap, 1990) • Locus of Control (Peleg, et al, 2009) external-fosters dependency, helplessness, blaming, seeking control of others, fear internal-fosters confidence, hope, spiritual center of value, seeking control of self, trust

25. Creating the Work-Arounds • Problem-focused coping stop-and-think alternatives • Emotion-focused coping humor self acceptance (Peleg et al., 2009)

26. Living in the PresentPlanning the Future • “I know we can make it if we try, yes we can, can” The Pointer Sisters • Child-centered • Lived spiritual experience and beliefs of child are primary • Accepting deficits and planning for support (Miller, 2006)

27. Keep on Keeping On “Now let us begin. Now let us rededicate ourselves to the long . . . but beautiful struggle for a new world.” ~ Rev. Dr. Martin Luther King, Jr.

28. References Dawson, Deirdre R. et al. “Return to Productivity Following Traumatic Brain Injury: Cognitive, Psychological, Physical, Spiritual, and Environmental Correlates.” Disability and Rehabilitation, 29(4):301-313, 2007. Frankl, Viktor. The Will to Meaning. New York: Penguin Books, 1969. Johnstone, Brick et al. “Relationships among Spiritual Beliefs, Religious Practises, Congregational Support and Health for Individuals with TBI.” Brain Injury, 23(5):411-419, 2009. Macauley, Robert, MD. “Spirituality in Childhood.” from course at University of Vermont Medical School, 2007. McColl, Mary Ann et al. “Spiritual Issues Associated With Traumatic Onset of Disability.” Disability and Rehabilitation, 22(12):555-564, 2000. Miller, Lisa. “Spirituality, Health and Medical Care of Children and Adolescents.” Southern Medical Journal, 99(10): 1164-1165, 2006. Nieuwenhuizen, Louis. “Psychospiritual Symptoms in Times of Crisis.” Chaplaincy Today, 24(2):3-13, 2008. Peleg, Gil et al. “Hope, Dispositional Optimism and Severity of Depression Following TBI.” Brain Injury, 23(10):800-808, 2009. Zinner, Ellen S. et al. “Grief Reactions of Mothers of Adolescents and Young Adults with TBI.” Archives of Clinical Neuropsychology, 12(5):435-447, 1997.