BEad Inspired!Caring for Children Coping with Serious Illness

Through Beads of Courage

Jean M. Baruch, RN, PhD

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”

Beads of Courage Cooperative Groupo 260 participating hospitalso 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 ManagerUnited States Air ForceProudly Served from 2002-06Honorably DischargedOperation Enduring FreedomOperation Iraqi Freedom

Patrick Murphy, Assistant Office ManagerUnited States Marine Corps2001-2009Iraq, Afghanistan, and Eastern Africa deployments

Beads of Courage Development

“Believe Passionately in something that does not exist and create it” – Nikos Kazantzakis

Lacked “tools” to address emotional needs of kids• “Beyond the sticker” phenomenon

Observations as camp nurse at therapeutic recreation camp

Children completing treatment seeking tangible signs of completion

Visit to the Bead Museum• Earliest art form known to humans• Beads as symbols of honor and accomplishment

Beads as Objects of ImportanceEarliest 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 clothDifferent trade value dependent upon color, shape, size or rarity

Signify status in many societiesSymbols of wealth Certain beads reserved for royaltyMay show rank or job

Associated with Strength, Courage, Longevity, ProtectionBeads made from Teeth, bones, clawsEye Beads – “eye” on protection and good luck

The Beads of Courage Program

A psychosocial supportive care program

Implemented by nurses and other clinicians at bedside

Children receive beads during treatment based on program bead guide

Colorful beads visually symbolize a specific treatment or procedure

Beads of Courage Bead Guide = Protocol

Procedure Bead ColorBone 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 Bead Guide = Narrative Medicine Protocol

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 Positive Health

Perspective• Role that promotion of

positive behavioral, environmental, and psychosocial factors have in health and well-being

Support or Strengthen Protective Resources

• Meaning and purpose,

• Social and emotional support, and

• Optimism

Alleviating the Experience of Suffering through Beads of Courage

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

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

Beads provide a language that helps to interpret the experience, giving voice to the sufferer

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

Kellie2x BMT survivor

Over 1,000 beads

Charlie“my beads make me feel happy after all the icky things”

250 beads

Providing Art as a form of Medicine

“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

Beads of Courage as an interactive and visual art form

Provide much needed sensory relief

Arts-in-Health “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)

“A time stamp of everything that has happened and what we’ve been through as a family”

Caring Science: Healing Happens in Sacred Space

The beads given in the program function as an embodied act vs. cognitive intent

Beads become a metaphor for the nurse’s caring intentions Authentic presence Commitment Reverence for Life

Celebration of Courage: Meet Nolan

Tangible symbols of Accomplishments and Honor

“He proudly and literally takes them everywhere…he now has 10 necklaces”

Beads are in our DNA: “Beads of Life” 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

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 enCOURAGEment 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