BEad Inspired Caring for Children Coping with Serious

BEad Inspired! Caring for Children Coping with Serious Illness Through Beads of Courage Jean M. Baruch, RN, Ph. D Executive Director and Founder Beads of Courage

“A man is not defined by what he has. What matters is the values he lives by and what he does for others. ” –Henri Landwirth Thank you for making healing happen for children with serious illness!

Beads of Courage, Inc. (a 501(c)3 tax-exempt organization) “Helping Children with Serious Illness Record, Tell and Own their stories of survival” l Beads of Courage Cooperative Group o 260 participating hospitals o 7 countries (USA, United Kingdom, Canada, Japan, Northern Ireland, Scotland, New Zealand) o Estimated 60, 000 BOC member children and families

Carlos Valles, Program Materials Manager United States Air Force Proudly Served from 2002 -06 Honorably Discharged Operation Enduring Freedom Operation Iraqi Freedom Patrick Murphy, Assistant Office Manager United States Marine Corps 2001 -2009 Iraq, Afghanistan, and Eastern Africa deployments

Beads of Courage Development “Believe Passionately in something that does not exist and create it” – Nikos Kazantzakis Ø Lacked “tools” to address emotional needs of kids • “Beyond the sticker” phenomenon Ø Observations as camp nurse at therapeutic recreation camp Ø Children completing treatment seeking tangible signs of completion Ø Visit to the Bead Museum • Earliest art form known to humans • Beads as symbols of honor and accomplishment

Beads as Objects of Importance Earliest art form of modern humans Preceding cave paintings and carved figures Oldest beads made from shells over 100, 000 years ago Form of currency – “Trade Beads” Used along with gold, furs, ivory, spices and cloth Different trade value dependent upon color, shape, size or rarity Signify status in many societies Symbols of wealth Certain beads reserved for royalty May show rank or job Associated with Strength, Courage, Longevity, Protection Beads made from Teeth, bones, claws Eye Beads – “eye” on protection and good luck

The Beads of Courage Program Ø A psychosocial supportive care program Ø Implemented by nurses and other clinicians at bedside Ø Children receive beads during treatment based on program bead guide Ø Colorful beads visually symbolize a specific treatment or procedure

Beads of Courage Bead Guide = Protocol

Beads of Courage Bead Guide = Narrative Medicine Protocol Procedure Bead Color Bone Marrow Aspirate/Biopsy Beige Course of Chemotherapy White Clinic Visit Blue Hair Loss/Thinning Brown and Face Bead Isolation/Fever/Neutropenia Lime Lumbar Puncture Tortoise Transfusion Red Pokes (IV starts, blood draws) Black Radiation Treatments Glow-in-the Dark Tests/Scans (EEG, ECHO, MRI, Bone Scan…) Light Green Inpatient Admission Yellow Bead Surgery Star Transfer to PICU Square Heart

Beads of Courage Program Beads: “narrative medicine” • Alphabet Beads • Procedure Beads • Milestone and Booster Beads • Act of Courage Beads • Handmade beads donated by the International Society of Glass Beadmakers • Given by clinicians to recognize treatment milestones not identified on bead guide

Advancing our Science and Practice: Outcomes of the Beads of Courage Program Integration of Nursing Theory, Research and Practice • Resilience • Suffering and Narration • Arts-in-Health • Caring Science

Beads of Courage Strengthens Resilience Ø Positive Health Perspective • Role that promotion of positive behavioral, environmental, and psychosocial factors have in health and well-being Ø Support or Strengthen Protective Resources • Meaning and purpose, • Social and emotional support, and • Optimism

Alleviating the Experience of Suffering through Beads of Courage Ø A state of severe distress associated with events that threaten the wholeness of the person • Physical, psychological, social, spiritual distress caused by intensive treatment for illness • There is loss of meaning and purpose while interpreting symptoms and illness experience Ø Alienation of the sufferer • Need for language or symbols that serve to interpret the experience – gives voice to the sufferer • To authentically connect with others

Alleviating the Experience of Suffering through Narrative Medicine Ø Beads provide a language that helps to interpret the experience, giving voice to the sufferer Ø The sufferer needs to be provided an opportunity to tell their story (Charon, 2005)

“They want to be able to tell their story…” “The beads show what I have been through” “I have two necklaces now”

…a new language to communicate with others, to interpret the experience, giving voice to the sufferer Ø Kellie 2 x BMT survivor Over 1, 000 beads Ø Charlie “my beads make me feel happy after all the icky things” 250 beads

Providing Art as a form of Medicine Ø “I think of the joy in her voice when someone would notice her beads hanging from her IV pole and ask her what they were for and she would say…those are everything I have been through , aren’t they pretty!” – Maude & Alyssa Miller Ø Beads of Courage as an interactive and visual art form Ø Provide much needed sensory relief

Arts-in-Health Ø “The arts serve patients and caregivers as powerful aids in times of emotional vulnerability and bring beauty into the stress-filled healthcare world” – SAH concept paper (2003) Ø “A time stamp of everything that has happened and what we’ve been through as a family”

Caring Science: Healing Happens in Sacred Space Ø The beads given in the program function as an embodied act vs. cognitive intent Ø Beads become a metaphor for the nurse’s caring intentions Ø Authentic presence Ø Commitment Ø Reverence for Life

Celebration of Courage: Meet Nolan Ø Tangible symbols of Accomplishments and Honor Ø “He proudly and literally takes them everywhere…he now has 10 necklaces”

Beads are in our DNA: “Beads of Life” Ø Objects and humans • Seeking objects and giving them meaning integral to human development • Strength of object relates to its capacity to materialize the invisible • Serve as metaphors to derive meaning and understanding of experiences forming sense of self • Adornment Ø Role of gift giving in humans • The spirit of the thing given • Necessity of exchange for human solidarity • Beads of Courage Carry A Bead Program

Enhancing Human Connectedness through the Carry A Bead Program YOU become a direct source of en. COURAGEment for a child in Beads of Courage

Goals of the Carry A Bead Program • Increase experience of social support • Provide opportunity for human caring and connectedness to transpire • Provide sustainable source of beads for program

Carry A Bead Program: Share your Strength. Share your Story. • Receive a matched bead set • One bead you keep • One bead you intentionally Carry and return with a story card and signed note of encouragement • Return bead will be distributed randomly to a child who is actively receiving Beads of Courage during treatment

“These beads are one of my most prized possessions. They represent a timeline of what I’ve been through”…Gabi