Storytelling, One Bead at a Time
Jean Baruch
Founder and Executive Director, Beads of Courage, Inc.
In 2003, Jean Baruch was a pediatric oncology nurse and doctoral candidate searching for a way to tend to the emotional needs of her patients. Having worked at Paul Newman’s Hole in the Wall Gang camp, she witnessed how kids of all ages respond to beading, proudly wearing, swapping or presenting their handiwork as gifts. So, she thought, why not use beads to acknowledge each step of the treatment journey? Strung together they would become a form of narrative medicine, allowing the youngest and most vulnerable patients the chance to tell the story of their illnesses, one bead at a time. What began as doctoral research has in 10 years grown to a program that’s served more than 30,000 seriously-sick kids worldwide.
The ABCs of BOC
It starts out as just a fun activity, but “as patients collect enough beads to start a second strand, it quickly transitions into a coping strategy,” explains Baruch. “If a kid is frightened about having a lumbar puncture, for example, they just look at their beads and actually see they’ve gotten through it many times before–it helps ease their anxiety.” On average, participants earn about 500 beads over the course of an illness.
How BOC Helps Nurses
The program provides a way to connect with a patient that doesn’t involve needles, tubes or bodily fluids. Giving a child a bead communicates compassion. “It’s an act of gift-giving,” says Baruch, who explains how it works both ways. “I’ve heard of kids giving their primary nurses one of their strands of beads. Nurses have told me that Beads of Courage has reawakened their calling, reminding them why they went into nursing in the first place. I’m so proud that nurses have fueled the growth of Beads of Courage.”
To implement the program at your hospital:
Beads of Courage, Inc. will provide program materials, training and on-going support. There are separate BOC programs for:
For more information, go to beadsofcourage.org.
Maria Gomez, RN, MPH
Founder, CEO and President, Mary’s Center, Washington DC
Treating a patient’s medical needs is just the beginning. “As a nurse, it’s very clear that the health-care system needs to offer wrap-around services,” says Maria Gomez. Mary’s Center, a Federally Qualified Health Center, does just that. It addresses all the factors that lead to poor health—such as poverty, lack of job opportunities, illiteracy—providing a safety net for a clientele who would otherwise fall through the cracks. The mission of Mary’s Center goes beyond improving health outcomes to building better futures. It’s motto, “Strengthening communities, one family at a time.“
The birth of Mary’s Center
Twenty-five years ago, when Mary’s Center opened its basement offices with a $250,000 grant and a healthcare staff of 10, it was to provide prenatal and postnatal services to underserved, mostly Latino women. As the babies grew and the needs of the mothers changed, Mary’s Center expanded its services to include pediatric care and programs for teens and women. Now with four locations, two mobile units and an annual budget of $14 million, Mary’s Center provides a range of educational programs and social services, in addition to comprehensive healthcare for the whole family. “There is a view that people in this country are poor because they have no incentive,” explains Gomez, in a tone that says, What, are you kidding me? It takes education, opportunity and hope in addition to good health care to give the disadvantaged a push up the economic ladder. By doing that and creating a supportive community that connects people to the services they need, Mary’s Center is transforming lives.
Responding, reflecting
The evolution of Mary’s Center has been a response to the needs of the communities it serves, but at its core, it’s very much a reflection of its founder. Gomez and her mother immigrated to the US from Colombia when she was 13. “It’s remembering my own childhood and thinking about what would have helped me grow up without so much uncertainty that was the impetus for all this,” she says.
Ann Burke, RN, M.Ed
Co-founder, Lindsay Ann Burke Memorial Fund
Co-founder, Love Is Not Abuse Coalition
Ann Burke was never attracted to the spotlight. But after her 23-year-old daughter, Lindsay, was murdered by her ex-boyfriend, Burke began a very public campaign for the prevention of relationship violence through education.
Class action
In 2005, not long after Lindsay’s death, Burke was back at her post teaching an eighth-grade health class in Kingston, RI, when she looked into the eyes of her students and thought, “this is crazy, we teach kids about drugs and smoking, HIV and STDs, even about heart disease, but we never mention anything about dating abuse.” She thought back to the 80s when schools were first required to educate students about HIV, and realized that a state law mandating relationship abuse prevention as part of the curriculum for middle- and high-school students would be the most effective way to help others like Lindsay. “This couldn’t be a one-off class, it had to be taught consistently.”
Laying down the law
Burke worked tirelessly researching other states’ policies, drafting provisions she thought should be included in a law, lining up powerful allies, including Rhode Island’s Attorney General, and testifying before the legislature. In 2007, Rhode Island passed the Lindsay Ann Burke Act, the nation’s first comprehensive law requiring education about dating violence as part of the curriculum in grades 7 through 12. Since then 22 states have followed suit, and thanks to Burke and other advocates, there’s a provision in the latest Violence Against Women Act to include teen dating abuse prevention and education.
A look back
“Do I think if Lindsay had been properly educated and if we as parents and a family had been properly educated it would have been easier for Lindsay to get out of that relationship safely? Yes. Absolutely.”
As heartbreaking as that admission is, she’s comforted by the knowledge that her work is providing other young women with tools to leave unhealthy relationships, and that she was able to do what she was taught to do: save lives.
A note to nurses
Nurses have a role to play in helping end relationship abuse. “Educate yourself about dating and domestic violence, so you recognize the warning signs–and understand that teens can be victims as easily as adults,” suggests Burke. Before Lindsay died, Burke couldn’t understand why her beautiful, intelligent, had-it-altogether daughter didn’t leave her abusive relationship. “Here I was, a nurse and a health educator and I knew nothing about the psychology of victimization; I had never even heard the term ‘learned helplessness.’” Be aware of the stats–and learn more at labmf.org.
Statistics from the US Dept. of Justice, Centers for Disease Control and Prevention, and Liz Claiborne Inc. teen dating violence survey
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