Summer Disease-State Camps

Tom Savonick, Senior Medical Writer

I’m more than a few decades past my summer camp days, but I still vividly recall the sights, sounds, and excitement of Camp Waywayanda, a YMCA camp in the hills of rural Northern New Jersey. In those halcyon days, we swam, played games, told ghost stories around the campfire, and annoyed the local bass with baited hooks that an energetic 8-year-old just couldn’t hold still. Every day at camp seemed the best day ever, and that’s an experience no child should miss.

But, summer camp can be a difficult experience for children with special medical needs. They may not be able to play all the games if a bleeding disorder rules out some of the rougher activities. They may not be able to pig out on fresh s’mores if they haven’t learned how to control their type 1 diabetes. And, they may miss out on the swim if today is their day for chemotherapy.

Fortunately, there are summer camps with activities and education custom tailored for children with special medical needs, such as diabetes, hemophilia, cancer, asthma, and other, less common, conditions. One of the great things about these camps is that every camper there knows what it’s like to have the condition. At camp, kids meet and learn from other kids and adult counselors who:

•  Understand first-hand what it’s like to have their condition
• Share their strategies for coping with their condition
• Learn how to turn everyday challenges into everyday triumphs 
• Inspire campers with their personal accomplishments at school, in play, and at work 
• Help campers make new friends and develop their own lifelong support systems

Fun and education for children with special medical needs are the dual purposes of Artcraft Health Specialty Camps. We are the country's leading creator and producer of national support programs for disease state summer camps. We've developed compelling programs for campers, camp counselors, and clinician educators at specialty camps for asthma, oncology, diabetes, and hemophilia.

In addition to the benefits that our programs provide to campers, they also provide significant benefits to the companies that sponsor the camps:\

• Increases access for field forces
• Reinforces relationships with healthcare professionals, parents, young patients, and the community 
• Builds relationships with clinical staff at camps
• Connects with parent through unbranded, educational take-home materials

Our programs can include any combination of fun and education while empowering campers to feel more in control of their condition. As the lead medical writer on the summer camp program, it’s been a rewarding experience for me to know that I’m helping kids have fun, gain independence, and learn about their conditions. It’s also been a blast to recall those great days I had at summer camp. Like the time when we all got together to lift the head counselor’s tiny German car into a tree about 6 feet off the ground. Or, the time the can of beans exploded in the campfire. I could go on, but maybe it’s time to help a new set of campers create their own memories.

If you’d like to learn more about our disease state camp programs, please visit:

http://www.artcrafthealthed.com/solutions/specialty-camps.aspx

A Novel Patient Education Tool for Latino Americans

Latino Americans, who include people of Cuban, Dominican, Mexican, Puerto Rican, and South or Central American descent, comprise the largest and fastest growing minority group in the United States. They also represent a high health risk group. Consider these facts:

• Latino Americans have 2 to 3 times the prevalence of type 2 diabetes mellitus than non-Latino Caucasians and are at higher risk for diabetes-related complications and poorer outcomes

• A large study published by Daviglus et al¹ in JAMA in 2012 revealed that 71% of women and 80% of the men surveyed had at least one major cardiovascular risk factor, such as hypertension, hypercholesterolremia, or obesity

• The HIV infection rate among Latino Americans in 2009 was nearly 3 times as high as that of Caucasians (26.4 vs 9.1 per 100,000 population)

High morbidity rates among US Latino populations translate into an ever-increasing burden on our healthcare system—and on taxpayers.

Given their high health-risk status, Latino Americans have become an important target audience for health educators.  Unfortunately, this group has lower literacy levels than non-Latino Caucasians. So, what is an effective way to educate this population and motivate them to adopt healthy lifestyle behaviors? 

 Soap operas as a patient education tool

"Telenovela" is the Spanish word for soap opera. Unlike American soap operas, which have all but disappeared from network TV, telenovelas continue to be an integral part of popular culture in many Central and South American countries. While the story lines may be exaggerated versions of real life, many viewers strongly identify with their favorite characters and are drawn in by the compelling twists and turns of the plot.

The great potential for telenovelas to influence health behaviors was realized in 1986, when a character on a Venezuelan telenovela was diagnosed with breast cancer. This triggered an avalanche of women getting checkups in both Venezuela and Spain, where the series also aired. Here in the US, in the summer of 2001, a long-running daytime soap opera, The Bold and the Beautiful, began a subplot about HIV and displayed the CDC National STD and AIDS Hotline phone number while the scenes ran. Researchers at the CDC recorded dramatic spikes in the number of hotline calls (1,426 and 1,840 vs the average of 200 calls or less) following just 2 episodes of the HIV subplot. They concluded: "...many members of the American public can be motivated to seek health information by a dramatic, televised storyline that addresses health issues."³

Telenovelas' wide popularity and demonstrated ability to impact health behaviors has prompted researchers and clinicians, in recent years, to tailor telenovelas for patient education. Here are 2 examples.

The Challenge of Being Healthy: Martha and Sandra's Story

Researchers at the University of Massachusetts Medical School created a 6-episode telenovela as part of a 3-year study called the Lawrence Latino Diabetes Prevention Project.² The study evaluated the impact of weight control, nutrition, and exercise programs for 312 low-income residents of the largely Hispanic town of Lawrence who were determined to be at high risk of developing diabetes.

Participants watched the telenovelas and then took part in a guided discussion about the decisions made by the characters, some of whom were overweight. Bad decisions included bringing doughnuts to a party and buying sofrito, a widely popular Latino cooking sauce that contains excess sodium. A positive episode was based on a daughter who decides to enroll in healthy cooking classes, and her reluctant mother, who eventually tastes the food and decides it's not so bad.

The lead researcher commented, “I realized we had a lot of potential from a video rather than a book. With the soap opera, they got engaged, and they identified with the characters. It allowed them to talk about their own challenges and how they perceived themselves...It was entertaining, as opposed to sitting in a lecture.”

Researchers reported the results of the study to be small but meaningful: A weight loss of just five pounds produced substantial reductions of prediabetic indicators, including insulin resistance. 

Sin Vergüenza (Without Shame)

By 2011, the HIV prevention manager at Alta Med, a Los Angeles health clinic, had concluded that traditional patient HIV education methods were insufficient to raise HIV awareness and decrease stigma among neighborhood Latinos. With a federal grant, she and her colleagues created a 4-episode telenovela addressing various aspects of HIV and AIDS. 

Sin Vergüenza (Without Shame) encourages Latinos to get tested for HIV as a routine part of their preventive health care, and to seek medical care should they test positive. The videos introduce family members who each represent a different age group, sexual orientation, and marital status. Each character also represents a separate HIV risk group. The series, airing on YouTube and accessible at altamed.org, weaves HIV education among broader (and more entertaining) topics such as stigma, infidelity, and family secrets. While addressing the difficult issues surrounding HIV, the videos also portray the unconditional love and support that carries this family through challenging times—qualities that strongly resonate with Latino audiences.

Why are telenovelas effective as patient education tools?

Research has found soap operas to more effective than other broadcast formats, such as PSAs, news shows, and evening dramas for disseminating health information to Latino populations because:

•        Latino households watch more daytime television than other audiences, according to Nielsen Media Research

•          Soap operas are viewed as a credible source of information by many Latinos

•          Content is delivered in a dramatic, engaging style by characters whom the viewers care about and with whom they can identify

•          The serialized format provides opportunities to repeat and build upon preventive health messages, enhancing both comprehension and retention

•          Viewers display better recall of the health messages when the content is presented in a story format that they can follow over time  

Artcraft Health Education takes on the cultural challenge

Artcraft Health Education has extensive experience in effectively communicating with multicultural patient audiences. Our award-winning animation and print materials promoting testing and treatment for hepatitis B have been translated into 14 languages. At the time of this writing, we are having a brochure and poster educating about COPD translated into 5 languages. We have also proposed a telenovela that can be viewed in waiting rooms and on the brand's Web site. If your needs include creating patient education materials for multicultural audiences, Artcraft Health Education is here to help.

Tina Ryman, MS

Senior Medical Writer

References

1.  Daviglus ML, Talavera GA, Avilés-Santa ML, et al. Prevalence of major cardiovascular risk factors and cardiovascular diseases among Hispanic/Latino individuals of diverse backgrounds in the United States. JAMA. 2012;308;1775-1784.

2.   Merriam P, Tellez T, Rosal M, et al. Methodology of a diabetes prevention translational research project utilizing a community-academic partnership for implementation in an underserved Latino community. BMC Med Res Methodol. 2009;9:20.

3.  Increases in calls to the CDC National STD and AIDS Hotline following AIDS-related episodes in a soap opera. Hollywood Health and Society Web site. http://www.hollywoodhealthandsociety.org/sites/default/files/for-public-health-professionals/research-and-evaluation/BBHotline.pdf. Accessed September 12, 2013.

Clinical trials as the first line of treatment: Empowering patients to decide

Gene S Lysko

Medical Writer

We know that clinical trials are the cornerstone of new-drug marketing approvals. But there’s more to it than that. For a considerable number of patients with advanced cancer or rare disease, clinical trials represent a potential lifesaver—or at least their chance for the highest currently available standard of care—offering hope to patients who may not have another treatment option.

It’s in these instances that a clinical trial may not only be considered as first-line treatment, but in some cases, treatment guidelines specifically recommend a clinical trial as a patient’s best option for potentially effective therapy. When a clinical trial is recommended (whether by treatment guidelines or by a patient’s doctor or nurse), it’s important for the patient to understand and truly appreciate the possible benefits and risks of participating.

It’s here that education plays a key role. Education can help to:

•  Dispel myths—“no one’s experimenting on me” and “I might only get a sugar pill”

•  Empower patients by explaining in plain words the benefits and the potential risks

• Break down barriers to recruitment and retention

• Show patients that clinical trials help all of us (appeal to altruism) 

Artcraft Health Clinical Trials (www.artcrafthealthed.com/clinical-trials/) optimizes the use of health education to create a unique path to meeting recruitment and retention goals, which increases the strength of your clinical trials. Visit our corporate Web site at http://www.artcrafthealthed.com/ to learn how we can help you.

A Reflection From A Medical Writer

I have arrived, yet another day at work as a medical writer...I sit down at my desk, prioritize my deadlines, and turn on my computer eager to uncover the answers and find the words to help improve the health outcomes of others.
 

I have 8.5 hours to educate patients about a novel treatment option for their recurrent brain cancer; parents about a medicine that can help their babies breathe as they lay helpless in the NICU; and young children about the risks of high blood pressure and what it means to take part in a clinical trial. Is this possible?  I often come across as overwhelmed, which I am, but overwhelmed with anticipation as I contemplate how each of these audiences will respond to the content I reveal about their condition. I read through the clinical data, the published journal articles, and prescribing information. I struggle to find the patient-friendly, yet clinically accurate terms that will communicate each of these disease states and treatment options. I have an important job.

Each and every day I am tasked with finding common ground between brand objectives; medical, legal, regulatory reviews; financial scope; healthcare provider initiatives; and the needs of patients and caregivers. Who is my audience I ask? How can we all benefit from the words I choose to educate about a specific condition or treatment? How do I empower patients in one sentence, yet tell them to always talk to their doctor in the next? There are so many considerations, so many consequences to take into account and I think to myself, is it possible to adhere to my true purpose and passion in life...to motivate patients to take control of their health.

My contemplation becomes an affirmative reality when months later I walk into my OB/GYN's office to see my words explaining the menstrual cycle posted on the wall. And when I hear the nurse educators describe the positive impact of a teaching easel I wrote about brain cancer and the success of a diabetes book for kids encouraging them to make healthy choices that went digital. The many hours of researching, writing, and collaborating with my colleagues and clients pays off. 

I am not alone in my motivation to help others. I work with a team of very passionate and dedicated people who discuss, develop, and design the most impactful patient and professional education with the end-user in mind. My words are only the beginning. I am amazed by what transforms with the artistic insight of our graphic designers, medical illustrators, and medical animators. My words come to life. Together we tell a story. A story that is accurate, insightful, and inviting. A story that will make a positive difference in the lives of others. 

All in a day's work!

Lynn Altmaier, BS, BSN, RN, MSc

                                                                                                                  Senior Medical Writer at AHE