DiversityNursing Blog

By JANE E. BRODY

The teenage years can be tough enough under the best of circumstances. But when cancer invades an adolescent’s life, the challenges grow exponentially.

When the prospects for treatment are uncertain, there’s the fear of dying at so young an age. Even with an excellent chance of being cured, teenagers with cancer face myriad emotional, educational and social concerns, especially missing out on activities and losing friends who can’t cope with cancer in a contemporary.

Added to that are the challenges of trying to keep up with schoolwork even as cancer treatment steals time and energy, and may cause long-lasting physical, cognitive or psychological side effects.

Sophie, who asked that her last name be withheld, was told at 15 that she had osteosarcoma, bone cancer. After a bout of how-can-this-be-happening-to-me, she forged ahead, determined to stay at her prestigious New York high school and graduate with her class.

Although most of her sophomore year was spent in the hospital having surgery and exhausting chemotherapy, she went to school on crutches whenever possible. She managed to stay on track, get good grades — and SAT scores high enough to get into Cornell University.

Now 20, Sophie is about to start her junior year and is majoring in biology and genetics with a minor in computer science. She plans to go to medical school, so this summer she has been studying for the MCATs and volunteering at a hospital.

Her main concern now is that people meet and get to know her as a whole, normal person, not someone who has had cancer, which is why she asked that I not identify her further.

“I’m pretty healthy, and I don’t want people to think I’m weak and need special care,” she said in an interview.

“Having cancer puts other issues into perspective,” she added. “I feel like I have to do as much as I can. I’ve gotten involved in so much. I try to enjoy myself more. And I don’t regret for a minute how I’ve been spending my time.”

Sophie’s determination to do the most she can and her desire for normalcy are hardly unusual, said Aura Kuperberg, who directs an extraordinary program for teenagers with cancer and their families at Children’s Hospital Los Angeles. Dr. Kuperberg, who has a doctorate in social work, started the program, called Teen Impact, in 1988. It operates with the support of donations and grants and deserves to be replicated at hospitals elsewhere.

“The greatest challenge teens with cancer face is social isolation,” she said in an interview. “Many of their peers are uncomfortable with illness, and many teens with cancer may withdraw from their friends because they feel they are so different and don’t fit in.”

In the popular young adult novel “The Fault in Our Stars,” a teenager with advanced cancer says, “That was the worst part of having cancer, sometimes: The physical evidence of disease separates you from other people.”

Within the family, too, teenagers can feel isolated, Dr. Kuperberg said. “Patients and parents want to protect one another. They keep up a facade that everything will be O.K., and feelings of depression and anxiety go unexpressed.”

Teen Impact holds group therapy sessions for young patients, parents and siblings so they “don’t feel alone and realize that their feelings are normal,” Dr. Kuperberg said. The goal of the program, which also sponsors social activities, is to help young cancer patients — some still in treatment, others finished — live as normally as possible.

“For many, cancer is a chronic illness, with echoes that last long after treatment ends,” Dr. Kuperberg said. “There are emotional side effects — a sense of vulnerability, a fear of relapse and death, and an uncertainty about the future that can get in the way of pursuing their hopes and dreams. And there can be physical and cognitive side effects when treatment leaves behind physical limitations and learning difficulties.”

But, she added, there is often “post-traumatic growth that motivates teens in a very positive way.”

“There’s a lot of altruism,” she said, “a desire to give back, and empathy, a sensitivity to what others are going through and a desire to help them.”

Sophie, for example, took notes for a classmate with hearing loss caused by chemotherapy. She recalled her gratitude for the friend “who was there for me the whole time I was in treatment, who would come over after school and sit on the couch and do puzzles while I slept.”

One frequent side effect of cancer treatment now receiving more attention is the threat to a young patient’s future reproductive potential.

In an opinion issued this month, The American College of Obstetricians and Gynecologists urged doctors to address the effects of cancer treatment on puberty, ovarian function, menstrual bleeding, sexuality, contraceptive choice, breast and cervical cancer screening, and fertility.

“With survival rates pretty high now for childhood cancers, we should do what we can to preserve future fertility,” said Dr. Julie Strickland, the chairwoman of the college’s committee on adolescent health care. “We’re seeing more and more cooperation between oncologists and gynecologists to preplan for fertility preservation before starting cancer treatment.”

The committee suggested that, when appropriate, young cancer patients be referred to a reproductive endocrinologist, who can explore the “full range of reproductive options,” including the freezing of eggs and embryos.

For boys who have been through puberty, it has long been possible to freeze sperm before cancer treatment.

Although some female patients may be unwilling to delay treatment, even for a month, to facilitate fertility preservation, at the very least they should be offered the option, Dr. Strickland said in an interview.

She described experimental but promising possibilities, like freezing part or all of an ovary and then implanting it after cancer treatment ends. It is already possible to move ovaries out of harm’s way for girls who need pelvic radiation.

Source: http://well.blogs.nytimes.com

By Robert Preidt

Many children get anxious or afraid when they have to get a vaccination, but there are a number of ways that parents can make these shots easier for their kids, an expert suggests.

The first step is to explain to children in an age-appropriate way that the vaccinations help protect their health, said Rita John, director of the pediatric primary care nurse practitioner program at Columbia University School of Nursing in New York City.

"Children need to know that vaccines aren't a punishment or something negative, vaccines are something that keeps them from getting sick," John said in a Columbia news release. "When parents are anxious, they pass that fear on to their kids. The best way to talk about vaccines is to keep the conversation positive and focused on the benefits of vaccination."

Before a vaccination, you can reduce toddlers' and preschoolers' anxiety if you give them a toy medical kit so that they can give pretend shots to you or a favorite doll or other toy.

When you arrive for the shot, ask the clinician to use a numbing cream or spray to limit the pain caused by the needle. Blowing on a bubble maker or a pinwheel can help distract younger children during vaccinations, while listening to music, playing games or texting may benefit older children and teens.

"If the kids think something is going to reduce their pain, there can be a placebo effect where the technique works because they expect it to work," John explained.

"It doesn't matter so much what you use to make your child more comfortable so long as you do something that acknowledges that they may experience some pain and that they can do something to make it hurt less," she added.

Be sure to reward and/or praise children after a vaccination. For example, give stickers to younger children. "You want the final part of the experience to make kids feel like even if they suffered some momentary pain, it was worth it," John said.

"Good play preparation, a positive attitude about immunization, and bringing something to distract kids during the shots can all help make the experience better," she concluded.

Source: http://www.nlm.nih.gov

By Jason Lee

Surgeons in Beijing, China, have successfully implanted an artificial, 3D-printed vertebra replacement in a young boy with bone cancer. They say it is the first time such a procedure has ever been done.

During a five-hour operation, the doctors first removed the tumor located in the second vertebra of 12-year-old Minghao's neck and replaced it with the 3D-printed implant between the first and third vertebrae, CCTV.com reported earlier this month.

"This is the first use of a 3D-printed vertebra as an implant for orthopedic spine surgery in the world," said Dr. Liu Zhongjun, the director of orthopedics at No. 3 Hospital, Peking University, who performed the surgery.

The boy was playing football when he headed the ball and injured his neck, and it was later confirmed that he had a tumor, Minghao's mother said.

Prior to the surgery, the patient had been lying in the orthopedics ward for more than two months, and he could occasionally stand up, but only for a few minutes.

Normally, a diseased axis would be replaced by a standardized, hollow titanium tube, Liu told Reuters.

"Using existing technology, the patient's head needs to be framed with pins after surgery," as his head cannot touch the bed when he is resting for at least three months, he explained. "But with 3D printing technology, we can simulate the shape of the vertebra, which is much stronger and more convenient than traditional methods."

Five days after the surgery, Minghao still could not speak and had to use a writing board to communicate. However, doctors said at the time that he was in a good physical condition and they expected him to make a strong recovery.

Source: http://www.cbsnews.com

By SYDNEY LUPKIN

Roger Corcoran has been a window washer for 35 years. But on Wednesday, he was Batman.

The 61-year-old grandfather of two rappelled down the side of Mayo Clinic Children’s Center alongside Spiderman and Superman.

“When a kid wanted to know why I was so old, I told him I played the original batman,” Corcoran said with a chuckle.

John Carroll, 48, dressed up as Spiderman.

“It’s one thing I look forward to doing all year,” said Carroll, who has worked as a window washer for 15 years.

After rappelling down the side of the building, Carroll and Corcoran went inside to meet the kids, who were appropriately shocked to come face-to-face with their high-flying heroes.

“The first time it happened, I was kinda crying because it means a lot to those kids,” Carroll said.

Carroll and Corcoran work at ISS Facility Services, which washes windows for Mayo Clinic. Charlie Kleber worked with Mayo Clinic to set up the special event, and said he picked some of his best guys to swing down and make the kids smile.

He said he’s watched even the sickest kids come alive when they’re face-to-face with the superheroes.

He called Wednesday’s superhero experience “life-changing,” and said they were all struck by a special patient: 13-year-old Claire Strawman, who in April became the youngest heart-lung patient Mayo Clinic had ever transplanted.

She told them about how she went into lung failure and underwent a transplant in April. She was hospitalized for about seven months before being released a few weeks ago. But she got sick on Monday and needed to come back.

“I got goose bumps right now telling you that story,” Kleber said.

Claire is on immunosuppressant drugs to prevent her from rejecting the new organs, but the drugs also make her more prone to infections. When she got sick, her parents worried and brought her back to the hospital, according to her mom, Ellen Strawman. She was in the pediatric ICU when the superheroes visited.

“Just seeing them put a big smile on her face,” Strawman said, adding that Claire left the hospital today for her home in Bloomington, Minnesota.

“She told us what happened to her and everything. We were all standing around her tearing up,” Carroll said. “That story made you feel so proud to do it for the kids because it means so much to them. It was great.”

Source: http://abcnews.go.com

By Associated Press

Disabilities among U.S. children have increased slightly, with a bigger rise in mental and developmental problems in those from wealthier families, a 10-year analysis found.

Disadvantaged kids still bear a disproportionate burden.

The increases may partly reflect more awareness and recognition that conditions, including autism, require a specific diagnosis to receive special services, the researchers said.

Meantime, physical disabilities declined, as other studies have suggested.

The study is the first to look broadly at the 10-year trend but the results echo previous studies showing increases in autism, attention problems and other developmental or mental disabilities. It also has long been known that the disadvantaged are more likely to have chronic health problems and lack of access to good health care, which both can contribute to disabilities.

The researchers studied parents' responses about children from birth through age 17 gathered in 2000-2011 government-conducted health surveys. Parents were asked about disabilities from chronic conditions including hearing or vision problems; bone or muscle ailments; and mental, behavioral or developmental problems that limited kids' physical abilities or required them to receive early behavioral intervention or special educational services. Nearly 200,000 children were involved.

Results were published online Monday in Pediatrics.

Overall, disabilities of any kind affected 8 percent children by 2010-2011, compared to close to 7 percent a decade earlier. For children living in poverty, the rate was 10 percent at the end of the period, versus about 6 percent of kids from wealthy families.

The overall trend reflects a 16 percent increase, while disabilities in kids from wealthy families climbed more than 28 percent, the researchers found. The trend was fueled by increases in attention problems, speech problems and other mental or developmental disorders that likely include autism although that condition isn't identified in the analyzed data.

Declines in asthma-related problems and kids' injuries accounted for much of the overall 12 percent drop in physical disabilities. Better asthma control and treatment and more use of bike helmets, car seats and seat-belts may have contributed to that trend, said lead author Dr. Amy Houtrow, a pediatric rehabilitation specialist at the University of Pittsburgh.

The developmental disability increases echo what Dr. Kenneth Norwood, a developmental pediatrician in Charlottesville, Virginia sees in his medical practice.

"I'm routinely backed up six months for new patients," said Norwood, chairman of the American Academy of Pediatrics' Council on Children with Disabilities.

Norwood thinks there is more awareness of these conditions and that some, including autism, are truly rising in prevalence. Autism is thought to result from genetic flaws interacting with many other factors. Some studies have suggested these may include parents' age and prenatal infections.

Source: www.foxnews.com

By Karen Weintraub

Parkinson's disease is like a "rolling wave" of ever-changing symptoms, not a lightning strike of different events, says its most famous patient, the actor Michael J. Fox.

So when doctors ask for a list of recent symptoms, they miss a lot of the subtleties of the progressive disease.

Hoping to change that, the Michael J. Fox Foundation and Intel announced Wednesday that they are collaborating on a project to track Parkinson's patients 24/7.

Using a device like the popular FitBit (a wristband activity monitor), patients will be tracked over the course of their day, as their medication kicks in and wears off, as food hits their system, as their environment changes and as they sink into sleep. The data generated will be so enormous that Intel's digital expertise will be needed to make sense of it, both organizations said.

The information should lead to new insights into a disease diagnosed in about 60,000 Americans a year, leading to tremors, paralyzing stiffness and physical awkwardness, among other symptoms.

"The answers are within us," Fox said in an interview. "We just need to find a way to let people into our brains both literally and figuratively to help us figure this out."

The collaboration, which started with a small pilot trial of 25 people this spring, aims to measure patient gait, tremors and sleep patterns, among other metrics, and stream the data in real time to the cloud. Intel, which provided the servers and software to collect and manage the data, is also developing algorithms to help analyze it, said Diane Bryant, senior vice president and general manager of Intel's Data Center Group.

Former Intel CEO Andrew Grove has had Parkinson's since 2000, and initiated the discussion between the company and the foundation, Bryant said.

The company isn't disclosing how much it is investing in the project, but Bryant said that costs for this kind of effort have fallen dramatically in recent years. "Ten years ago it would have been ridiculous to consider" a project like this, she said.

The collaboration is Intel's first step into health care, but it likely won't be the last.

"It's a wonderful first step for us," Bryant said. Health care lends itself well to so-called big-data analytics, because there is so much information to collect on a patient, from symptoms to genetics to lab results.

Fox Foundation CEO Todd Sherer said doctors score the disease's severity based on how the patient feels during a visit – but symptoms can change minute by minute, from near normal to completely disabling.

"If the doctor is running 15 minutes late, the assessment could be completely different than if they'd seen the disease 15 minutes earlier," Sherer said.

Also, he said, sometimes patients minimize symptoms for their doctor, or time their medication so they'll perform well during the visit. "The doctor might say everything's doing great, and we'll hear from the spouse: 'You should have seen them yesterday.' "

The same problems also make research into the disease more difficult. It's hard for researchers to get a realistic view of whether a treatment is effective, if they only get occasional snapshots of a patient.

The new devices will therefore provide a much more realistic – and objective – view of the disease than has been possible before, Sherer said.

If shown effective during pilot studies, he said, the devices will likely be used both for clinical research trials – in which the patient data will be anonymous – and, say, for a week before a doctor's visit, to provide an update on a patient's disease.

Source: www.usatoday.com

By: American Profile

School nursing started out as a practical solution for Beth Mattey: The mom of three liked the hours. Now, 27 years later, she says it was the perfect career choice—creative, independent and full of meaning. “As Maya Angelou said, ‘People never forget how you made them feel,’” Mattey says. “That’s the connection that school nurses make.” We asked Mattey what parents might be surprised to know about her job—and their kids.

1. Sadness is one of the most common illnesses she sees in students. “Kids are anxious and want to do well,” she says, noting a 2012 National Association of School Nurses report that the top five health conditions of U. S. children are mental health- related, issues that school nurses spend about a third of their time helping students cope with.

2. Every kid should carry a water bottle. Dehydration is often the cause of headaches, another common complaint among kids, Mattey says. Also a culprit? Lack of sleep.

3. School nurses need to know your secrets. In addition to any chronic conditions your student is coping with, update your school’s nurse on any big family news like an illness, death or divorce. Your instinct might be to keep such facts private, but the nurse can offer your child valuable support.

4. Your kids aren’t eating the lunch you pack. “I often ask teens what they had for lunch, and they say, ‘Chips.’ We need to help them understand the value of nutrition and to make good choices,” Mattey says.

5. A “mental health day” is not a stress solution. Allowing your anxious teen a day off won’t get to the root of the cause. “If a kid is too stressed to go school, find out why,” Mattey says. “Is she being bullied? Did she not do her homework?”

6. Teens need vaccines. Make sure yours is up to date on the Tdap or tetanus, diphtheria, pertussis; meningitis—one at age 11, the second at age 16; and the HPV (human papilloma virus).

7. A school nurse can be a teen’s— and parent’s—best friend. Mattey sees herself as supporting students, physically and emotionally. After all, she’s there day after day, year after year. “School nurses provide a safety net,” she says.

Source: www.tauntongazette.com

By Meaghan O'Keeffe

Sometimes, being part of the nursing profession can feel exactly the same as being part of a family. You love it dearly, you can’t imagine your life without it, but there are lots of things about nursing (and family) that can drive the most balanced person completely nuts.

Deep down, you love nursing, even with all of its vein-popping, blood pressure elevating quirks.

Here is Scrubbed In’s list of things about nursing that drive nurses absolutely nuts, but we deal with anyway.

1. Call lights: Of course the purpose of call lights is to enable patients to get help when needed, but it’s hard not to get annoyed at the call light itself. It’s blinking, beeping, and taunting you because you just sat down to document. (See #2)

2. Documentation: For the love of all things nursing. Documentation is our greatest tool and the bane of our existence, all wrapped up into a flowchart, and an I&O’s chart, a nursing note, an incident report, a pre-anesthesia evaluation form, a…

3. (For our guys) Being called “male nurse:” For the men in our nursing community, hearing someone refer to them as a nurse, without “male” automatically attached, would be a breath of fresh air.

4. Body fluids: Nurses deal with body fluids all the time. It’s par for the course. But it’s not exactly something one wishes for. We don’t need to name them all. You’re well acquainted with most. They can really dampen your day. Pun intended.

5. Waving your ID to get into your bathroom at home: Many healthcare facilities have areas where you need to scan your ID to unlock the door. When you’ve tried that to get into your bathroom at home, it might be time to take a vacation.

6. Trying to use your fingerprint at the ATM: If you regularly use your fingerprint to get into medication and supply stations, you might find yourself trying to do the same at the ATM screen. Just hope that no one saw you.

7. Hearing a patient-alarm-like sound (outside of work): You’re out and about and someone’s cell phone ring sounds uncannily like an O2 sat alarm. Before you’ve had a chance to process, your pulse has quickened and you’re on high alert. Calm down, nervous system; you’re off duty today.

8. Patients who don’t take the full course of antibiotics: When a patient gaily reports that they stopped taking their antibiotics because they feel sooo much better, there’s a specific protocol you must follow. It involves closing your eyes, taking deep breaths and counting to 10 before calmly explaining the rationale behind completing the course in full.

9. Waking up at 5 a.m. on your day off: Finally, finally you can sleep in. You’ve been looking forward to it for days. But your brain seems determined to wake up as if you need to work today. At least you can stay in bed with your feet up.

10. Bringing a coffee to work, then drinking it cold four hours later: A hot cup of coffee at the start of your day is one of the simple pleasures of life. But did you really think you were going to drink it? You might at some point, it just may be more like iced coffee by then.

Your Turn

What drives you nuts about nursing?

Source: http://scrubbedin.nurse.com

ALSA

It may be warm in parts of the country, but some people aren’t drenching themselves in ice or cold water to cool down from elevated temperatures. A new phenomenon has hit the social media circuit – the “Ice Bucket Challenge.”

The challenge involves people getting doused with buckets of ice water on video, posting that video to social media, then nominating others to do the same, all in an effort to raise ALS awareness. Those who refuse to take the challenge are asked to make a donation to the ALS charity of their choice.

Beverly, Mass., resident Pete Frates, started the “Ice Bucket Challenge” with his family on the social sites Facebook and Twitter.  Frates, 29, has lived with ALS since 2012, and he has worked with The ALS Association’s Massachusetts Chapter.  A former Division 1 college athlete with Boston College Baseball, Frates tirelessly spreads awareness of Lou Gehrig’s Disease.

This viral sensation, which has used the hash tag #IceBucketChallenge, has attracted thousands of followers, including Boston Bruins stars Brad Marchand and Torey Krug, who willingly dropped frozen ice on themselves and issued the challenge to others.

“This is a creative way to spread ALS awareness via social media and in communities nationwide,” said Barbara Newhouse, President and CEO of The ALS Association.  “We thank Pete Frates and his family for getting so many people involved in spreading the word about ALS.”

Other examples of the challenge can be viewed on the Team FrateTrain Facebook page.

Source: www.alsa.org