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Southwest Pediatrics Medical Home newsletter
January 2010
EVENING OF ELEGANCE
HEALTH LITERACY - DOCTOR
HEALTH LITERACY - PARENT
HEALTH LITERACY - LIBRARY
SMALL GAINS - BIG REWARDS
WEB RESOURCES
LOCAL ORGANIZATIONS |
An Evening of Elegance
Saturday, April 24
Crowne Plaza Hotel, 10499 W. Innovation Drive, Wauwatosa, Wis.
Touched by the attention and care her special needs son received at Children's Hospital of Wisconsin, Tammy Flynn wants to give back to those who helped her family. She is the owner of Elegance Salon and Spa in New Berlin and has organized "An Evening of Elegance."
The event will include food stations, entertainment and more. The event is supported through donations from more than 50 local businesses including Tutto, Carnevor, Umami Moto, The Grove, Charro, Innovations, Crawdaddy's, Simma's Bakery, Philoptochos Ladies Society, 88 Keys, Claim Jumper, Sweet Somethings LLC, Canfora Bakery, Le Cakery, Music on the Move, Milwaukee Youth Symphony Orchestra, Alfa Flowers, Uncommon Affairs, Inc, 4PM Magazine and many more.
Tammy and her core of volunteers have secured more than $100,000 of in-kind donations to host the event. If you would like more information, contact Tammy at (262) 785-0880 or e-mail her at elegance@wi.rr.com.
For more information, visit elegancesalonandspa.com.
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Health literacy
By Chris Schwake, MD, pediatrician, CMG-Southwest Pediatrics
Health literacy is how well people understand basic health information presented to them. It is also how people use health information to make decisions in their best health interests. Communication skills and health-related knowledge of both the health care providers and the patients involved affect one's health literacy. The cultural background and belief system of patients and health care providers also affect health literacy, as well as the context of the situation in which the health information is presented.
Health information can be difficult to understand, even for people with strong literacy skills in other parts of their lives. How we understand people's health and how health care is provided changes rapidly, as well. Health information that a person learns when he or she is young, or even within the last couple of years, can quickly become outdated or inaccurate. If the visit with a health care provider is at all stressful or uncomfortable, even well delivered health information may be difficult to understand or remember. People with limited health literacy more often rate their health as poor and have more frequent hospital stays. They also use preventive health services such as check-ups and vaccines less often.
In a typical health care visit, a health care provider delivers health information to a patient-family with the expectation that the patient family will effectively and efficiently use the information after leaving the office. It is important that the health care provider is aware of how health literacy impacts the care he or she is providing.
You should expect your provider to use plain language to improve health literacy. Health care providers should organize the information they provide in a manner so that the most important points are given first. Complex information should be broken down into small, understandable chunks. If you hear terms that are too technical, ask for a full definition.
Assessing the patient family's understanding during and after the encounter is another step to improve health literacy. Your provider should ask if you have questions to make sure you understand what is being explained to you.
As a patient or family member, you are entitled to simple, clear information about your family's health situation. Sometimes, a health care provider may be unaware that he or she is providing information that is too confusing or complex. While it is a duty of the health care provider to give information in the simplest form possible, it is perfectly appropriate to let the health care provider know that clarification is needed. Keep asking for clarification until all your questions are answered. Hopefully, such questions will be a reminder to the provider that he or she needs to use plain language more consistently when talking with patient families.
If you would like to learn more about health literacy, visit npsf.org/askme3. |
Health literacy-How parents can advocate for themselves
By Rene Petritis, RN, CMG-Southwest Pediatrics
From the moment we bring our newborn children home from the hospital, we must make decisions on how to best care for them. We may haveæ prepared ourselves by reading books, researching on the Internet, attending prenatal classes or getting advice from our families, friendsæ and health care providers. Perhaps we already have some knowledge and experience from our other children to guide us. How we understand all this information and apply it to our own children's health care needs can be a difficult task. This is especially trueæ when you have a child with special health care needs.
Regardless of age, race, educational background or income, parents have questions and concerns and need guidance to help them make health care decisions. It cannot be assumed that a parent with a college degree, or even a medical background, will make better treatment decisions than a high school graduate when it comes to his or her child's well-being.
For example, a child may be taken to the emergency room with breathing trouble and sent home with an Albuterol inhaler. The medication instructions say, "Use every four to six hours as needed for cough." It is now up to the parents' interpretation as to how often and when to use the inhaler. If the child has stopped coughing but is now struggling to breathe, does the parent administer the inhaler or simply monitor the child? When is it necessary to call the pediatrician or return to the office for follow-up care? If the parent doesn't fully understand the seriousness of the illness or instructions given, there may be a delay in treatment, which may lead to serious consequences.
Office appointments can very often be stressful to parents in many different ways, regardless of whether their child is healthy or sick. Health care providers sometimes cover a lot of health information, may use medical jargon or words that are difficult to understand, or may refer the child to a specialist. Parents may feel rushed at the appointment and forget to ask all their questions or may leave out detailed information about their child's health concerns. Often parents leave the office feeling overwhelmed, frustrated or even confused about what was just discussed. If parents have difficulty understanding and using health information such as how to give medications correctly or schedule follow-up appointments, this may lead to poor health outcomes for their child.
To have strong health information skills, parents need to advocate for themselves at the provider's office. Effective communication is key between the parent and health care provider. Some ways to ensure you will understand the medical advice or treatment directions are:
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Asking the right questions.
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Describing your child's symptoms accurately.
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Bringing along a family member or friend to the visit.
Parents need to be direct with their provider and unafraid to admit they don't understand what was discussed or the instructions given. At the same time, providers need to relay medical information at a parent's level, making sure there is a clear understanding of the diagnosis and treatment instructions. This may be as simple as drawing a picture or writing down instructions in very basic terms. Providers also must be sensitive to how difficult it can be for parents to learn new health care concepts. He or she should keep in mind that health information provided in a stressful or unfamiliar situation, such as in the ER, may be forgotten. Also, caring for a child with a chronic health condition can be very different than caring for a healthy child.
Providers need to allow time for parents to address questions or encourage parents to call with questions or concerns after the visit. This helps keep the communication lines open. Ultimately, parents who are involved and knowledgeable in health decisions will have children with improved health outcomes. |
How you can use your library to improve your health literacy
Fill your information prescription at your local library.
Yes, you know that your public library has books; books about diseases, disorders, prescription drugs, over-the-counter drugs, and coping with a diagnosis. However, did you know that the library can direct you to a wealth of other resources?
When you see your doctor, you may have lots of questions you're not comfortable asking, you may forget to ask them or you may not have time to ask them. So, why not use some dependable medical and health information resources for free at your library? All you need to do is see a reference librarian to receive assistance with online medical Web sites, databases and other resources.
Online information is an extremely valuable tool for information. However, it is important to keep in mind that anyone can post anything at anytime. There are no regulations to stop people from posting inaccurate information. Besides asking a medical or health services librarian or a reference librarian at your public library to help you find health information, some additional suggestions for evaluating Web sites on your own include:
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Consider the author of the Web site.
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Check to see when the site was created and last updated.
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Determine the purpose and objective of the site.
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Determine if the site has extensive coverage.
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Check if the site is easy to navigate.
MedlinePlus.gov is an authoritative and trusted health information site. It is sponsored by the U.S. National Library of Medicine and the National Institutes of Health. The site has a user-friendly search tool to help direct you and answer your health questions. The site includes information about medications, medical encyclopedias, interactive patient tutorials and the latest health news.
Here are some other useful online health information resources provided by the American Library Association:
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Wellness Information Zone ( wellzone.org). A program of the Humana Foundation and Libraries for the Future. -
Healthy People Library Project ( healthlit.org). A project of the American Association of the Advancement of Science. Contains a useful Health Resources section.
The New Berlin Public Library continues to add great new books on a variety of medical topics as well. Consult a reference librarian if you need assistance finding any medical information or resources, or if you have suggestions for future purchases on a medical topic. |
Small gains, big rewards
By Kim Gunn, Parent Advisory Committee member
Raising children is a great responsibility. And raising a child with special needs takes time and energy, and extra care that can be overwhelming. As parents, we place a lot of pressure on ourselves when we set unrealistic expectations such as comparing one child to another.
To encourage a child with special needs, parents also need to feel encouraged. Rejoicing in the small steps of their progress can ensure we stay positive. Success needs to be measured as anything that moves us toward our ultimate goal.
Over the past three years, my husband and I focused on teaching our daughter how to eat. She was born with a heart defect that affected her ability to eat solid food by mouth when she was an infant. We have learned to savor the little things and not take her small gains for granted.We have had great gains and many setbacks. We had to start with basic skills such as getting her comfortable with having anything in her mouth without crying or gagging. It took two years to break down her sensitivity to oral interaction. It was then we could move forward to help her achiever her eating skills.
She has since learned how to use her tongue, handle different textures of food and understand the processes of chewing and swallowing. Once she discovered how great food can taste and that she enjoyed it, it took many months to teach her not to stuff too much food in her mouth at once. We needed to teach her to break down her food by chewing on her back teeth. It took many months of practice and reminders. As her maturity increased, she started to feel what it's like to be hungry. Understanding hunger is very hard for a child who has been tube fed. She was used to having her body nourished without having to act or think about it. As she grew and gained weight, we had to monitor her daily calories and water intake to avoid pain from constipation. It was a constant balancing act.
Once these measures are met, and everything begins to work together well, a child can flourish and gain confidence in his or her own abilities to eat and drink. Our current goal is to eat a reasonable amount of calories in an appropriate amount of time. Again, this takes time to practice as our daughter develops speedy eating in conjunction with good eating skills.
When my daughter stopped eating at 5 months old, I thought within one year I would have her eating again. I was incredibly na¥ve about understanding the depth of an eating aversion. I placed a lot of pressure on myself and my abilities to have her eat by mouth. Maybe if I worked harder on this with her she would eat? Was I missing something that was not allowing her to progress? I felt that since I was working so hard we should reach our goal much faster. You get an "A" in school when you work hard, and I was putting the time and effort in, where was my "A?" As time passed I found I was greatly mistaken. I learned to get excited when she could handle anything in her mouth; when she could taste yogurt, suck from a straw, gain movement in her tongue or enjoy the taste of a new food.
We had to learn how to make eating exciting and inviting. We rewarded her when she had a positive eating experience, completed new eating requests or was engaged in the eating process. The setbacks along the way would send my spirits down. Each time she was sick it would interrupt her ability to want to eat, and it would make it hard for her to swallow. There were many times she would feel constipated and complain of pain, making her lose interest in eating. But as my daughter's speech therapist pointed out, she will learn to bounce back faster from each setback as her eating skills improve. As I witnessed her bouncing back faster each time we had a setback, she gave me the encouragement I needed to stay diligent and continue to work with her.
When you face setbacks with your child with special needs, take time to close your eyes and envision your child reaching his or her goal. This past month, we watched our daughter play and eat a snack, and she remembered the correct process of chewing and swallowing. One after the other she placed food in her mouth without us reminding her. We could have watched her eat all day long. It was amazing!
Through this I have learned also to pay attention to my children. When a child has a special need from a young age, they aren't always able to tell you or understand that something is wrong. To them, it's normal because it has always been that way.
Now that my daughter is old enough to articulate, I ask her lots of questions to get a good sense of how she is feeling. Never hesitate to ask questions of your child's specialist and primary care physician, even if you don't think it matters. Our parental instincts can be a wonderful guide. You may discover the information you provide your doctor with is noteworthy. Even understanding medical terminology can be an excellent asset to parents.
I have found the Web site medterms.com to be very helpful. This site is supported by MedTerms and is the medical reference for MedicineNet.com. It is a great resource for understanding difficult medical language. More than 16,000 medical terms are presented with simple explanations. The search engine provides quick access to hard-to-spell medical definitions through an extensive alphabetical listing.
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Web Resources
Here are some online resources for parents of children with special needs:
Wisconsin Department of Instruction's special needs acronyms dictionary: http://dpi.wi.gov/SPED/acronym.html.
Raising Special Kids - List of acronyms and definitions: http://www.raising-special-kids.com/acronyms.html.
Centers for Disease Control's Early Hearing Detection & Intervention (EHDI) Program: http://www.cdc.gov/ncbddd/ehdi/abbrev.htm.
University of Wisconsin's LEAP acronyms: http://www.son.wisc.edu/LEAP/activities/reports/AcronymsList.pdf.
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Local Organizations
By Jill Koebernik, Parent Advisory Committee member
Goodwill of Southeastern Wisconsin
goodwillsew.com
Goodwill provides training, employment and support services for people with disabilities or disadvantages who seek greater independence. The Human Service division of Goodwill extends an array of services to individuals with severe disabilities, which enable them to develop personal skills and achieve greater participation within their communities. Some of the opportunities include:
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Goodwill on the Move (weekend recreation programs).
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Adult day programs and recreation.
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Community Opportunities Club-drop in activity center.
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Counseling and referral services.
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Educational and informational seminars.
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Vocational placement opportunities.
Paragon Community Services, LLC
paragon-wi.com
Paragon Community Services works to create opportunities for people with disabilities. This organization encourages people with disabilities to reach their personal goals and enjoy a wealth of social and recreational activities. Its mission is to provide creative, community activities for people with disabilities. This organization offers an array of activities that include:
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Adult day programs.
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Respite services.
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Paragon Activity Club (recreation and socialization activities for youth).
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Formal therapies (massage, speech, occupational and physicial).
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Transportation services.
ARCH (Association for the Rights of Citizens with Handicaps)
waukeshaarch.org
This organization promotes the health, safety and achievement of children and adults with disabilities.
ARCH is parent-led and family-driven. It is focused on building a world where all people are valued and encouraged to contribute. ARCH offers a unique variety of programs and services that include:
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