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DiversityNursing Blog

After 2 Liver Transplants Woman Becomes Transplant Nurse

Posted by Erica Bettencourt

Wed, Jun 17, 2015 @ 12:31 PM

By Erica Bettencourt

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When did you first know you wanted to be a Nurse?

This story is very touching about a patient’s perspective of Nurses at a very young age. Her experience with the Nurses who cared for her over the years, made Nursing an obvious choice for her.

Laurie Lukianov, 26, is a woman from Massachusetts who received two liver transplants as a child and is now working to become a transplant nurse. She told Boston Children's Hospital's blog “There is no question in my mind. Since I was 3 years old, I wanted to be a nurse.”

Laurie was born with biliary atresia and she needed liver transplants to save her life. At 3 years old she made headlines when she became one of the first patients in the country to receive a liver transplant from a living donor -- her father, Alex Lukianov.

When she was 13, Laurie Lukianov needed a second liver transplant. It came from an organ donor, and she had to fight for her life.

"I had 13 emergency surgeries from the two-week span from the initial transplant," Laurie Lukianov said.

But she won the fight and continued on to good health with the help of her family, a great surgeon and nurses.

Now the mother to a 6-year-old boy, already works in a local emergency room and is finishing her first year of nursing school.

Laurie Lukianov is also an advocate for organ donation. She tries to let potential donors know that the medical staff will do everything to save a life. Sometimes modern medicine falls short but, the gift of life is never lost on the recipient. 

Topics: emergency room, nursing school, nurse, transplant nurse, liver transplant, biliary atresia, organ donation

Seattle Preschool in a Nursing Home 'Transforms' Elderly Residents

Posted by Erica Bettencourt

Wed, Jun 17, 2015 @ 12:02 PM

GENEVIEVE SHAW BROWN

abc news 

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What happens when you bring preschoolers and the elderly together to share the simple things in life? This story and video are very touching. We think it’s a terrific idea to spread across the country.

It's being done at a preschool in Seattle, where child care takes place throughout a campus which is also home to more than 400 older adults.

Called the Intergenerational Learning Center, the preschool is located within Providence Mount St. Vincent, a senior care center in West Seattle. Five days a week, the children and residents come together in a variety of planned activities such as music, dancing, art, lunch, storytelling or just visiting.

And now this incredible place is about to have its own film. Called "Present Perfect," it was shot over the course of the 2012-2013 school year by filmmaker Evan Briggs, who is also an adjunct professor at Seattle University. Funded completely out of her own pocket and shot by her alone, Briggs has now launched a Kickstarter to fund the editing of the movie. She has more than $45,000 of her $50,000 goal with 15 days to go.

Residents of "the Mount," Briggs said, did a "complete transformation in the presence of the children. Moments before the kids came in, sometimes the people seemed half alive, sometimes asleep. It was a depressing scene. As soon as the kids walked in for art or music or making sandwiches for the homeless or whatever the project that day was, the residents came alive."

The kids, she said, took everything in stride. She talked of a moment at the beginning of the film trailer when a young boy, Max, is meeting an elderly man named John. John has to repeatedly ask Max his name, calling him Mack, Matt and Match. "That scene actually went on far longer that what you see in the trailer. But Max was just so patient, he just kept repeating his name over and over."

Interestingly, the parents of the students don't send their kids to the Intergenerational Learning Center primarily for the experience with the seniors. "It's got a great reputation and great teachers," said Briggs. But parents of kids who were in the class that she embedded herself in for the school year now tell her they see the benefit of the model. "One father told me that he especially sees it now that his own parents are aging."

She named the film "Present Perfect" she said, as a reference to the fact that these two groups of people — the preschoolers, who have almost no past and so much future and the elderly who such rich past but very little future — really only have a few years of overlap in their lives.

"It's also about being in the present moment," Briggs said, "something so many adults struggle with."

Briggs said the moments between the kids and the residents "sweet, some awkward, some funny — all of them poignant and heartbreakingly real."

Briggs hopes her film will open a conversation about aging in America. She writes on her Kickstarter, "Shooting this film and embedding myself in the nursing home environment also allowed me to see with new eyes just how generationally segregated we’ve become as a society. And getting to know so many of the amazing residents of the Mount really highlighted the tremendous loss this is for us all."

She called the preschool a "genius" idea that is "well within our reach" on a larger scale and hopes the idea expands to other schools around the country. "It's a great example of how we integrate the elderly into society."

Topics: nursing home, nursing, preschool, elderly residents

Google Glass Improves Parkinson's Symptoms

Posted by Erica Bettencourt

Wed, Jun 10, 2015 @ 02:49 PM

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Here’s an interesting option for people with Parkinson’s Disease to cope with the motor skills challenges they face every day. It’s another example of technology improving people’s lives.

Parkinson's Disease is a nervous system disorder that affects a person's movement. The most common sign of this disease is hand tremors. Other signs like stiffness or slow movement can also be common. Parkinson's Disease has symptoms that will worsen with progression of the condition over time. This disease has no cure but, medications or physical therapy programs can help improve symptoms. 

Google Glass was a failure. At least, according to most people. But not for one specific group: people with Parkinson's. They've been experimenting with new software for Glass and say that it improves the quality of their lives.

People suffering from Parkinson's have challenges with their motor skills. Joy Esterberg, who was diagnosed with Parkinson's in 2003, compares the feeling to moving through mud. She was an early adopter of the Glass software, which has been in development for the last year. 

"It is very sci-fi," Esterberg said of Glass. "What I like about it is that I can wear it at home. You have the little screen, you see David dancing, and you can follow the moves." 

She's talking about David Leventhal, the director of the Mark Morris Dance Group's Dance for PD program, which has been offering free dance classes for people with Parkinson's since 2001.

When a user activates Glass, they can choose from a variety of different exercises, like "warm me up" or "balance me." Once selected, they see Leventhal or one of his co-teachers projected in front of them. 

This technology is especially important because when people with Parkinson's walk down the street, they sometimes freeze up. In order to get going again, they often need to watch someone else's movements or footsteps. This can be problematic, especially if there's no one around.

The software, called Moving Through Glass, is based off exercises done in Leventhal's weekly class. The movements have roots in ballet and modern dance, and include a lot of extension exercises, which are particularly helpful for people with Parkinson's. Some students are very mobile, while others are confined to wheelchairs and exercise with assistance. 

To get the Glass project going, Leventhal applied for a $25,000 Google (GOOG) grant. He got it, and then partnered with SS+K, a New-York based advertising agency with a strong focus on social responsibility. It developed the software for free through its innovation lab.

Though still in the pilot stage, it's hoped that the software will make people with Parkinson's more independent and confident when they go outside. 

"It's surprisingly un-weird," Esterberg said. "In New York, nobody is going to look at you if you have something on your face. You'd have to have orange feathers sticking out of it for people to notice." 

More and more of the students in her dance class will be using Glass as part of the program. There are about 50 people who attend each week in Brooklyn, and it's known as a place for camaraderie and acceptance. 

"Everyone comes to dance class for a reason," Leventhal said. "Some people come to escape Parkinson's. Some people come because they want to work on specific skills related to balance or coordination or musicality."

There isn't data on how successful the class has been, but Levanthal said he sees it in students' stories. One student, he said, had been able to dance at a family member's wedding thanks to the class. Esterberg said she dances better now than she did before Parkinson's because she practices every day. 

For now, the Glass software is still in the early stages, and the dance studio has 25 pairs available for students to borrow. However, the future is uncertain because Google stopped selling Glass earlier this year, saying it will focus on future incarnations. 

Whatever Glass 2.0 looks like, Leventhal said his students will have a lot of feedback and, no matter what, they'll still be dancing. Esterberg certainly will be, and said she hopes more people will see that a diagnosis doesn't have to mean giving up. 

"You can do new things," she said. "You don't have to just accept [that Parkinson's is] the end of everything. Because it really isn't."

Contributor: Jillian Eugenios and Erica Bettencourt

Story Source: CNN

Topics: innovation, medical technology, health, healthcare, patients, Google Glass, Parkinson's Disease

Nursing Stigma in the Hispanic Community

Posted by Erica Bettencourt

Wed, Jun 10, 2015 @ 09:11 AM

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By Pat Magrath – DiversityNursing.com

When you think of the nurses in your life – family, friends and coworkers – are they all female? For many years, this has been the reality. But these days, more men are getting into the field of nursing. A friend of mine, Esteban, and I were chatting about his 18-year career as a nurse.

Esteban grew up in Puerto Rico. His family came to the U.S. when he was a child. His father and brother are policemen, a field primarily dominated by men. When he talked to his mother about becoming a nurse, she wasn’t excited about it because “if you’re Hispanic and interested in becoming a nurse, it is assumed you’re gay.” When she realized his passion for nursing, she was supportive and advised him respectfully.

Esteban explained that, in his culture, there is “machismo.” The Urban Dictionary defines machismo as “having an unusually high or exaggerated sense of masculinity. Including an attitude that aggression, strength, sexual prowess, power and control is the measure of someone’s manliness.” With the nursing profession being predominately female, Esteban’s mother feared he’d be teased and not seen as a strong “man.”

In Esteban’s Hispanic culture, he explained, “female nurses are completely accepted with pride, but for a male nurse it is expected you’re gay. Machismo is very strong in the Mexican, Dominican and Puerto Rican cultures. More straight guys are getting into nursing now. It is changing because of the nursing shortage and shortage of jobs. For many, this is a second career choice when men couldn’t find work in their first career choice.”

Esteban’s family has been extremely supportive of his chosen career, particularly while he was pursuing his master’s degree online. He explained how important family support is. His family provided some meals, continually asked what he needed and attended his graduation. They are very proud of him.

English is not Esteban’s first language, so classes and homework were very difficult. If you’re Hispanic and thinking about becoming a nurse, he advises, “don’t procrastinate.” He explains, “you need time to research and support your articles.” With English as his second language, “it took more time to check my sources, read it, read it again, and… read it again. Then… write and re-write my papers. English-speaking people can take about a half hour. It took me three times longer.” He offers great advice about the support of family and the expectation that assignments will take longer to complete.

Think about taking classes online as an option in pursuing your nursing career while juggling a busy life.

Esteban’s proficiency in Spanish comes in very handy while working at the VA in Harlem as an RN Care Manager. He is often asked to translate for patients, and most of Esteban’s patients are male veterans and Hispanic. He said, “they like a Hispanic male nurse taking care of them.”

He has plans to continue his education in the fall of 2016 and work toward attaining his doctorate. While achieving his master’s through an online program, which served him well, he envisions taking his PhD classes in a classroom to consult with instructors and collaborate with others.

Whenever Esteban talks to people about becoming a nurse, he loves to point out that “as a nurse, you can work in any setting – hospitals, schools, insurance companies, etc. If you don’t want to be a bedside nurse, there are different places to work.”

Gracias for your insights, Esteban! We appreciate all your hard work and dedication.

And if you’re thinking about getting into this field, this is a great time to do so.

I’m compensated by University of Phoenix for this blog. As always, all thoughts and opinions are my own.

Topics: diversity, nursing, hispanic, nurses, stigma

Diversity In Nursing [Infographic]

Posted by Erica Bettencourt

Mon, Jun 08, 2015 @ 03:11 PM

Erica Bettencourt

There is a need for diversity in the health industry, especially Nurses. Having more diverse nurses will improve access to healthcare for racial and ethnic minority patients. Also those patients will be more comfortable and have higher satisfaction. Diversity must be increased at all levels especially educational institutions. More cultural healthcare programs and initiatives should be offered for students.

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Topics: diversity in nursing, diversity, nursing, healthcare, patients

Gender transitioning for seniors has unique challenges

Posted by Erica Bettencourt

Mon, Jun 08, 2015 @ 01:30 PM

By Carina Storrs

CNN 

150601134616 bruce caitlyn jenner vanity fair cover exlarge 169 resized 600In your Nursing experience, have you worked with patients undergoing transgender changes? If so, please feel free to share your thoughts and experience.

When Caitlyn Jenner, 65, announced herself to the world on Monday, she joined a group of high-profile transgender women that includes Laverne Cox, star of "Orange is the New Black," and Chelsea Manning. Jenner's debut was greeted with an outpouring of support on Twitter, including politicians thanking her for bringing awareness to transgender people. 

Jenner's story, and others', is indeed bringing gender transitioning, which can involve surgery, hormonal therapy and behavioral changes, into the mainstream. "There's certainly a growing acceptance of gender diversity and understanding of how important [affirming internal gender] is," said Dr. Timothy Cavanaugh, medical director of the Transgender Health Program at Fenway Health.

It is estimated that one in 10,000 people who are born male feel their true identify is female or have a strong desire to be female. There are approximately 100 to 500 genital surgeries every year in the United States as part of gender transition, according to the Encyclopedia of Surgery. But that number could be growing. 

In the older generation, the demographic to which Jenner belongs, "I think many people thought their only option was to hide their internal gender or repress it [because] there wasn't a lot of social support or acceptance," Cavanaugh said. "With growing awareness, people in their 40s, 50s and up are coming to a place where they can do something about it," he added. 

But what does it mean to have gender transition procedures, particularly hormonal therapies and invasive genital and facial surgeries, for this older group, compared with transgender people in their 20s and 30s (which Cavanaugh says is the other common demographic)? Are there health concerns, or benefits, with undergoing physical changes later in life? 

Many transgender people take lifelong hormone therapy, and for transwomen (transitioning from male to female) hormones are estrogens and anti-androgens that block their body's testosterone. Jenner reported undergoing hormone therapy, along with a 10-hour facial feminization surgery and breast augmentation. The Olympic gold medalist and former husband of Kris Kardashian said she has not had genital surgery and it's unclear whether she will.

However, as people age, their bodies become less responsive to hormones, and estrogen's effects. Primarily, breast development and weight redistribution will probably be less dramatic in older transwomen compared with younger, Cavanaugh said. At the same time, doctors tend to prescribe a lower dose of estrogen in older women because of concerns of blood clots, and consequent heart attacks and strokes. 

"It may mean that it takes a little longer, that the feminization is not as vigorous, or the effects may not be as satisfactory in older transwomen," Cavanaugh said. However, physical changes do still occur, and they have clear psychological benefits for these women. (In transmen, or people transitioning from female to male, testosterone therapy is generally viewed as safer than estrogen and more effective, Cavanaugh added.)

Facial surgery can be part of gender transitioning for transwomen who have manly features, such as sagging brows that develop with age, said Dr. David Alessi, facial plastic surgeon and owner and director of the Alessi Institute in Beverly Hills, California. (He added that transwomen who have effeminate faces may not need surgery.)

It is possible to make the face look younger and more feminine at the same time, Alessi said. For example, lifting the brow makes it less saggy and removes wrinkles. But there are limits. "I can make a 60-year-old male look like a 50-year-old woman, but not like a 20-year-old girl," he said. 

The more difficult surgery, for all ages, is genital, and older transgender people have special challenges, Alessi said. In particular, surgeons create a vagina, typically using tissue from the penis. However, that tissue may die in its new location if it does not have good circulation, as is more common in older people, and the surgery would have to be repeated to graft tissue from the colon or mouth, Alessi said. "The goal is to do the genital surgery in one surgery, but more likely it takes two or three surgeries, and that is more likely in older patients," he said. 

There are also general problems with any surgery in people in their 60s and 70s. "Often they develop chronic medical conditions, such as high blood pressure and cardiovascular disease, that makes surgery a little bit more risky" because it could exacerbate these conditions, Cavanaugh said

Gender transitioning does not always involve hormone therapy and surgery, however. Among people in their 20s and 30s, who may have more access to information online and to support groups, "we see a number of younger patients who say, 'I just need my identity affirmed,'" Cavanaugh said. They can sometimes achieve this goal through dress and social behavior and finding groups of like-minded people. 

"[Yet] there are always going to be people who really feel a disconnect between internal gender and anatomy, especially when interacting with the world, that it makes more sense and is really beneficial for them to masculinize or feminize the body," Cavanaugh said.

Topics: transgender, gender, health, seniors, LGBT, caitlyn jenner

Smartphones to Nurses are Doctors on Call

Posted by Erica Bettencourt

Fri, Jun 05, 2015 @ 11:51 AM

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We found this interesting article about the growth of smartphone use and apps available to Nurses while at work. These apps are being used to research drugs, gather information about home care as well as diseases and disorders. This is an area that will continue to grow and hopefully provide much needed assistance to our hard-working Nurses.

A new survey indicates nurses are relying more than ever on their smartphone for clinical care – to the detriment of the so-called "doctor on call."

Conducted by InCrowd, a Boston-based market intelligence firm, the survey found that 95 percent of the 241 responding nurses own a smartphone and 88 percent use smartphone apps at work. More intriguing, 52 percent said they use an app instead of asking a colleague, and 32 percent said they consult their smartphone instead of a physician.

"The hospital gets very busy and there isn't always someone available to bounce ideas off of," one respondent said. Said another: "It's often easier to get the information needed using my smartphone – I don't have to wait for a response from a coworker."

Nurses have long been seen as an under-appreciated market for mHealth technology, and one that differs significantly from doctors, but that seems to be changing. Companies like Voalte are marketing communications platforms targeted at nurses, and even IBM has come out with a line of nurse-specific apps.

"There's a lot of untapped potential in the use of mobile apps for nursing," Judy Murphy, IBM's chief nursing officer, told mHealth News.

Unlike physicians, who are looking for apps that can retrieve information, enter orders and push notifications, nurses need apps that assist their workflow, offer quick information and coordinate multiple activities.

"It's all about care coordination," Murphy said. "Nurses want apps that can help them organize their day."

The ideal app will be simple in nature, so that it can be used quickly, and will help nurses organize several functions, from taking care of multiple patients to addressing orders from doctors, according to Murphy. Some tasks, like entering complex data into the EMR, actually clutter the form factor of the smartphone and are best handled at a workstation.

According to the InCrowd survey, nurses are quick to point out that their smartphones "enhance but don't substitute" for the physician, but when they're running around and need a quick question answered about medications, illnesses or symptoms, sometimes the app does the job more effectively – such as "in patient homecare situations when I need quick answers without making a bunch of phone calls," or "so I can make an educated suggestion to the doctor."

According to the survey, 73 percent of the nurses surveyed use their smartphones to look up drug information at the bedside, while 72 percent use it to look up various diseases or disorders. And befitting the various roles of the smartphone in the healthcare setting, 69 percent of nurses said they use their smartphones to stay in touch with colleagues. Other uses include viewing images and setting timers for medication administration.

Finally, the survey found that nurses are using smartphones in the workplace no matter who's paying for them. Some 87 percent of those surveyed said their employer isn't covering any costs related to the smartphone, while 9 percent are reimbursed for the cost of the monthly bill, 1 percent receive some reimbursement for the cost of the smartphone, and 3 percent are reimbursed for both the phone and the phone bill. Less than 1 percent, meanwhile, said their institution bans the use of personal smartphones while on duty.

"We're hitting the tip of the iceberg here with apps that a nurse will want and will use," Murphy said.

www.mhealthnews.com

Contributor: Eric Wicklund

Topics: health, healthcare, nurses, doctors, medical, clinical, clinical care, smartphones

A Young Person's Disease

Posted by Erica Bettencourt

Thu, Jun 04, 2015 @ 11:57 AM

We think this video and infographic are important to get out there to anyone you know, especially the young people in your life. It’s about melanoma and the fact that it strikes young people. It’s the 2nd most common cancer in children and teenagers! Some great information and tips. Please share it.


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Topics: public health, infographic, skin cancer, melanoma

Let The Nurses Free

Posted by Erica Bettencourt

Wed, Jun 03, 2015 @ 10:47 AM

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We wholeheartedly agree with this article that Nurse Practitioners across the country should be allowed to practice without a doctor’s consent in a variety of medical areas.

What are your thoughts about this important issue? Do you strongly agree or disagree?

In March, Nebraska became the 20th state to allow nurses with the most advanced degrees to practice without a doctor’s oversight in a variety of medical fields. Maryland recently followed suit and eight more states are considering similar legislation.

What does all this mean? Nurses in Nebraska with a master’s degree or better, known as nurse practitioners, no longer have to get a signed agreement from a doctor to be able to order and interpret diagnostic tests, prescribe medications and administer treatments.

These changes are long overdue.

The preponderance of empirical evidence indicates that, compared to physicians, nurse practitioners provide as good — if not better — quality of care. As I’ve written previously, patients are often more satisfied with nurse practitioner care — and sometimes even prefer it.

The Institute of Medicine is unambiguously clear about this: 

No studies suggest that APRNs [Advanced Practice Registered Nurse] are less able than physicians to deliver care that is safe, effective, and efficient or that care is better in states with more restrictive scope of practice regulations for APRNs.

In addition, see this review of the literature in Health Affairs.

In general, nurse practitioners have the skills to prescribe, treat and do most things a primary care physician can do. They generally must have completed a Registered Nurse and a Nurse Practitioner Program and have a Masters or PhD degree. In addition, there are physician assistants, registered nurses, licensed vocational nurses, emergency medical technicians, paramedics and army medics. In most states, each of these categories has its own set of restrictions and regulations, delineating what the practitioners can and can’t do.

What should each of these professionals be allowed to do? Whatever they’ve been trained to do.

The doctors counter that someone who hasn’t trained to be a doctor might miss important symptoms or clues that a physician might catch. This observation is true but trivial. Every professional might miss something that someone who is better trained might catch. A specialist might catch something a primary care physician might miss. A specialist in one field (say, oncology) might catch something a specialist in some other field (say ENT) might miss.

Perhaps more relevant to common experience, Emergency Medical Technicians riding in ambulances are treating victims of accidents and emergencies every day. Would the care be slightly less risky if we put doctors in all those ambulances? Maybe. Is anyone seriously suggesting that we do that? Of course not.

Think of health care as a large market in which everyone has to make decisions about whether the patient-provider nexus is the right fit. It’s not just the providers who have to decide whether the problem lies within their area of competence. Patients must make those decisions too. In Britain (under socialized medicine), patients make such decisions all the time. For routine problems, most Britons see a National Health Service physician. But “if it’s serious, go private” is a common bit of advice in that country.

How do professionals handle these decisions? From the most part quite well. Walk-in clinics (where nurses deliver care following computerized protocols) have been around for at least a decade. Studies show that the nurses follow best practices as well or better than traditional primary care physicians. And I am not aware of any serious, reported cases of nurses failing to distinguish between cases they are competent to handle and those they are not.

But even if a nurse did make a serious mistake, doctors make mistakes too. There is no such thing as a risk free world. We encounter tradeoffs between cost and risk every day. There is no reason for politicians (beholden to special interests) to make these decision for us.

In Texas, which has some of the most stringent regulations in the country, however, a nurse practitioner can’t do much of anything without being supervised by a doctor who must:

•Not oversee more than four nurses at one time.

•Not oversee nurses located outside of a 75 mile radius.

•Conduct a random review of 10 percent of the nurses’ patient charts every 10 days.

•Be on the premises 20 percent of the time.

These restrictions make it virtually impossible for Texas’ 8,600 nurse practitioners to practice outside the office of a primary care physician. The Texas requirement that a doctor supervising nurse practitioners be physically present and spend at least 20 percent of her time overseeing them creates an incentive for the physician to require nurses to be employees, rather than self-employed professionals. When practitioners are employed by a doctor, the physician meets state supervision requirements simply by showing up. This allows the doctor to see her own patients while generating additional revenue from patients seen by the practitioners.

These regulations have the greatest impact on the poor, especially the rural poor. The farther a nurse is located from a doctor’s office, the less likely the physician will be willing to make the drive to supervise the nurse. This means that people living in poverty-stricken Texas counties must drive long distances, miss work and take their kids out of school in order to get simple prescriptions and uncomplicated diagnoses. This problem might be alleviated if nurse practitioners were allowed to practice independently in rural areas. But, under Texas law, these practices must be located within 75 miles of a supervising physician. A physician with four nurses located in rural areas could drive hundreds of miles a week to review the nurses’ patient charts. The result is that doctors in Texas don’t receive a return on investment sufficient to induce them to supervise nurse practitioners.

If all this sounds like the reinvention of the Medieval Guild system, that’s exactly what it is. In Capitalism and Freedom, Milton Friedman argued that these labor market restrictions are no more justified today than they were several centuries ago. The proper role of government, said Friedman, is to certify the skills of various practitioners; then let consumers decide what services to buy from them.

Contributer: John C. Goodman

www.forbes.com


Topics: nurse practitioners, health, nurses, doctors, medical care

New Hearing Technology Brings Sound To A Little Girl

Posted by Erica Bettencourt

Mon, Jun 01, 2015 @ 01:10 PM

LAUREN SILVERMAN

www.npr.org 

auditory implant 1 resized 600Many of us are familiar with the cochlear implant, but did you know it doesn’t work for everyone? We came upon this article featuring information about clinical trials for a new technology that gives the hearing-impaired another option for the ability to hear.

Jiya Bavishi was born deaf. For five years, she couldn't hear and she couldn't speak at all. But when I first meet her, all she wants to do is say hello. The 6-year-old is bouncing around the room at her speech therapy session in Dallas. She's wearing a bright pink top; her tiny gold earrings flash as she waves her arms.

"Hi," she says, and then uses sign language to ask who I am and talk about the ice cream her father bought for her.

Jiya is taking part in a clinical trial testing a new hearing technology. At 12 months, she was given a cochlear implant. These surgically implanted devices send signals directly to the nerves used to hear. But cochlear implants don't work for everyone, and they didn't work for Jiya.

"The physician was able to get all of the electrodes into her cochlea," says Linda Daniel, a certified auditory-verbal therapist and rehabilitative audiologist with HEAR, a rehabilitation clinic in Dallas. Daniel has been working with Jiya since she was a baby. "However, you have to have a sufficient or healthy auditory nerve to connect the cochlea and the electrodes up to the brainstem."

Jiya's connection between the cochlea and the brainstem was too thin. There was no way for sounds to make that final leg of the journey and reach her brain.

Usually, the story would end here. If cochlear implants don't work, you turn to sign language. And the Bavishis did — for years they communicated with their daughter through sign language. But then they heard about an experimental procedure called an auditory brainstem implant.

It is a very rare procedure, according to Dr. Daniel Lee, director of the pediatric ear, hearing and balance center at Harvard Medical School. "There have been less than 200 of these implanted worldwide in children," he says. In the U.S., auditory brainstem implants are approved by the Food and Drug Administration for adults and teenagers who have lost their hearing due to nerve damage, but they have not been approved for use in younger children.

Surgeons in Europe have pioneered the use of the auditory brainstem implant in children who are born deaf and can't receive a cochlear implant, Lee says. "And those data look pretty encouraging."

So in 2013, the FDA approved the first clinical trial in the U.S. for young children. The Bavishis decided to apply for Jiya. It wasn't an easy decision. It would involve surgery to place a tiny microchip into Jiya's brainstem.

"The family was at a crossroads," Daniel says. Did they want to take a chance on a risky, experimental procedure to give their daughter a chance to hear? They decided to try the procedure and traveled from their home in Frisco, Texas, to Chapel Hill, N.C., for the eight-hour surgery. The University of North Carolina is one of four institutions investigating the implant.

Jiya's mom, Jigna Bavishi, pulls back her daughter's purple headband to reveal two of the three parts of the device.

There's the piece that sits on her ear, which works like a microphone to pick up sounds. That microphone is attached to a small black magnet that rests on her head. What you can't see is what the magnet is connected to. And this is what makes it different from a cochlear implant. Below the skin, there's a receiver, and down in the brain stem is the microchip. The idea is that the sounds picked up from the microphone on her ear end up in the implant in the brainstem.

"It's a rectangular shaped element," says rehabilitative audiologist Linda Daniel. "It has two rows of electrodes and each electrode is responsible for a band of frequencies." The electrodes transmit signals directly into the brain.

Daniel says we don't know exactly what Jiya hears.

"I think we could assume that it doesn't sound crisp, distinct, clearly interpretable," she says. "It would take longer to learn to interpret the sound."

Doctors told the Bavishis not to expect any changes for a year or two. But Jiya didn't take that long to start recognizing and mimicking sounds. On the day I visit, Jiya is playing with a yellow toy car. "Beep, beep," she says.

"They actually had to tell us, even though she's doing so good right now, we have to still be careful where we set our expectations," says Jigna.

Doctors will monitor Jiya, and four other children taking part in the study, for the next few years. They'll be studying how their brains develop and incorporate sounds and speech. There are two other clinical trials investigating auditory brainstem implants in children: one at Children's Hospital in Los Angeles, and the other at the New York University School of Medicine.

 

Topics: hearing, hearing loss, clinical trials, implant, cochlear implants, auditory brainstem implant, hearing aids

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