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Sustainable Caregiving -finding balance in the presence of serious illness

Learn how to navigate the challenges of caregiving in the world of serious illness. Explore distress and resilience, core teaching points, the Halifax GRACE model, and paths for further research. Discover strategies for addressing caregiver distress and spiritual resilience, including finding meaning, connection, and choice. This resource offers assessment and intervention techniques, along with related plans of care and helpful resources.

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Sustainable Caregiving -finding balance in the presence of serious illness

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  1. Sustainable Caregiving-finding balance in the presence of serious illness Judy Long, Palliative Care Chaplain Judith.long@ucsf.edu 5-20-19

  2. Who are the caregivers in the world of serious illness?

  3. Types of Caregivers  Friends/family  Patients  Clinicians

  4. Let’s talk about: • Distress and resilience • Core teaching/counseling points • Halifax GRACE model • Current threads / paths to further research • Q & A

  5. Caregiver Distress in Serious Illness • Common elements: • Meaninglessness • Isolation • Helplessness

  6. == Spiritual Distress in Serious Illness • Common elements: • Meaninglessness • Isolation • Helplessness

  7. What if we turn them around? • Meaninglessness  Meaning, Purpose Pro-Social Intention • Isolation  Connection • Helplessness  Choice

  8. Caregiver / Spiritual Resilience Strengthen overlapping areas of: Meaning, Purpose , Pro-Social Intention Connection and/or Choice

  9. Assessment/Intervention ‘Getting to know you’ and Scanning for: meaning connection sense of choice

  10. Related Plan of Care Pastoral Counseling and Psycho-Education  one-on-one  with family or friends  in a class Either way…  Live  in person  Live-Online  by computer

  11. Content Case-dependent In general: directed attention purpose/intention choice

  12. Why I usually begin with directed attention  Embodied introduction to mindfulness  Establishes safety first  Gives them an immediate choice they can act on (self-efficacy)

  13. Pro-Social Intention Recalling big Intention Setting daily intention Creating specific intentions

  14. *** Connection *** Relationships  Emotions Repertoire of stress responses Emotions 101 Meeting difficult emotions Mindful self-compassion + burden dynamic, forgiveness practice pre-death grief and chronic sorrow

  15. Choice Halifax GRACE intervention for balance RENEW intervention to reframe helplessness Growth in adversity and balanced listening Gratitude practice What works for me

  16. G.R.A.C.E. INTERVENTION • Provides those working in stressful situations a way to open to the experience of another, and to stay balanced in the presence of suffering.

  17. G.R.A.C.E. INTERVENTION • Gather your attention: attentional balance, grounding • Recall your (pro-social) intention • Attune to self and then other: affective resonance • Consider what will really serve • Engage (ethical enactment), then end https://www.upaya.org/social-action/grace/ Halifax, J. (2012). A heuristic model of enactive compassion. Current Opinion in Supportive and Palliative Care, 6(2), 228-235.

  18. Topics for further researchLive-Online classes for family caregivers, patients, interdisciplinary clinicians andscaling the availabilityNew therapies to promote safety and the attenuation of anticipation

  19. Q & A

  20. SELECTED RESOURCESIn an Unspoken Voice: how the body releases trauma and restored goodness, by Peter LevinePocket Guide to The Polyvagal Theory: the transformative power of feeling safe, by Stephen W. Porges“Just Breathe” kindergartners talk about mindfulness meditation 4 mins mindful magazinehttps://www.youtube.com/watch?v=RVA2N6tX2cg

  21. Greater PurposeYoutube clip of Stephen Cole at Telluride conference on the science of compassion, about the biology of purpose (how prosocial purpose is biologically beneficial) (I really enjoyed this one.)https://www.youtube.com/watch?v=ZCqYMdYa5DYArticle by Barbara Fredrickson, et al, on same topicFredrickson, B. L., Grewen, K. M., Algoe, S. B., Firestine, A. M., Arevalo, J. M., Ma, J., & Cole, S. W. (2015). Psychological well-being and the human conserved transcriptional response to adversity. PloS one, 10(3), e0121839.

  22. Dignity Therapy, developed by Harvey Max Chochinov and his palliative care team in Manitoba(there’s also a book)Chochinov, H. M., Kristjanson, L. J., Breitbart, W., McClement, S., Hack, T. F., Hassard, T., & Harlos, M. (2011). Effect of dignity therapy on distress and end-of-life experience in terminally ill patients: a randomised controlled trial. The lancet oncology, 12(8), 753-762.Book about how pro-social purpose helps adolescents to thrive The Path to Purpose: how young people find their calling in life, by William Damon

  23. Book about building compassionA Fearless Heart: how the courage to be compassionate can transform our lives, by Thupten JinpaCONNECTION Greater Good Science Centerhttps://greatergood.berkeley.edu/(note: Their opening page looks light, but when you click on their articles, they’re all evidence-based and user-friendly.)Gratitude Challengewww.thnx4.org

  24. Center for Mindful Self-Compassion (MSC)https://centerformsc.org/ (included guided practices)ChoiceVital Talk -- http://vitaltalk.org/ palliative care communications; also available as appUpaya Institute and Zen Centerhttps://www.upaya.org/

  25. GRACE training https://www.upaya.org/program/g-r-c-e-training-cultivating-compassion-based-interactions-2019/?id=2150RENEW protocol Back, A. L., Rushton, C. H., Kaszniak, A. W., & Halifax, J. S. (2015). “Why are we doing this?”: Clinician helplessness in the face of suffering. Journal of palliative medicine, 18(1), 26-30.

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