Final post

For my final post I want to review my project, my challenges and rewards, as well as my thanks to those who helped me this semester.

My project initially started with an educational intervention focus for adolescents with sickle cell disease, but evolved to incorporate health literacy and family centered care. Increasing health literacy has many benefits as it enhances a patients ability to make health care decisions and process basic health information. This is important for adolescents because they are faced with the challenge of transitioning to adult care and gaining autonomy in their health decisions. This project allowed me an in-depth look at adolescents who are faced with chronic disease.

The project was a fantastic experience and I wanted to outline some of the main rewards of my participation in the project.
Rewards:

• Working with patients and their families.
• Ability to attend traveling clinics and shadow specialists
• Improving professional skills in paper writing and presentations
• Exploring pediatric nursing as a career 
• Gaining experience in development of educational materials
• Ability to incorporate academic learning in a community setting
• My community agency and mentor were fantastic.
• Many others! 

With any major challenge there were a couple of challenges I would like share as well.
Challenges:

• Adolescents as a population are sometimes difficult to work with. They were both a reward and a challenge in the implementation of my project.
• Time constraints. I was not able to attend as many clinics as I would have liked to. However, the experiences I had were incredible.

I would like to give my thanks to my mentor in the project Kristen. She was a wonderful mentor and allowed me to shape a project within her area, supporting me with advice, guidance, and feedback. I would like to thank Children's Hospital for allowing me to attend their clinic and experience working with patients in their health care system. My final thanks is for my Honor's professors, Dr. McGuinness and Dr. Ivey, and my fellow classmates. Their feedback and support has been monumental in building and implementing this experience. Everyone should have the opportunity to further their educational goals through a service learning project as we have experienced.

A last look for you is my current poster for dissemination. Thank you for following!

Project #2

My second project assigned to enhance academic learning was the creation of a pretest/posttest for the NEXT step educational booklet. I developed twenty five questions to be used for 10-12 year olds about sickle cell disease, treatments, complications, and health management. Development of a questionnaire required background knowledge of educational materials, and health literacy. The project challenged me to produce an additional educational tool that was appropriate for the age group.

Here are some sample questions you should be able to answer from the information on my blog-

1. Sickle cell disease
1. Changes the shape of the platelets
2. Decreases the number of white blood cells
3. Can be given to another person like the flu
4. Damages and deforms red blood cells
2. A sign of gallstones, caused by the waste products of broken down red blood cells, is
1. Dizziness
2. Very yellow eyes (jaundice)
3. Shortness of breath
4. Coughing
3. The process of transferring care from a pediatric to adult health care provider is called
1. Discharge
2. Admission
3. Transition
4. Carrying over
4. Sickle cell disease is caused by
1. Receiving two normal hemoglobin traits
2. Receiving two abnormal hemoglobin traits
3. A virus
4. Receiving one abnormal hemoglobin trait and one normal hemoglobin trait
5. The most common presenting symptom of infection is
1. Fever
2. Coughing
3. Redness
4. Swelling
6. Pain occurs in sickle cell disease because
1. The body has too much oxygen
2. They body is over hydrated
3. Sickled cells block blood vessels
4. White blood cells are increased
7. Patients with frequent home pain or three or more hospital admissions for pain in year may benefit from taking
1. Hydroxyurea
2. Folic acid
3. Pneumovax
4. Benadryl
8. The organ responsible for filtering blood located in the left upper are of the abdomen is the
1. Heart
2. Gallbladder
3. Kidneys
4. Spleen
9. The signs and symptoms of stroke include
1. Sudden weakness in the arm, leg, or body
2. Severe headache
3. A difference in movement of one side of the face
4. All of the above
10. A screening tool used to detect stroke risk is
1. Chest X-ray
2. Blood counts
3. A transcranial Doppler
4. Blood transfusion

Let's see how you did!
The Answers are:
 1. D
2. B
3. C
4. B
5. A
6. C
7. A
8. D
9. D
10. C


The goal of the pretest/posttest is to allow a comparison of scores and evaluate the effectiveness of the educational session.

My next post will be my final as the project is wrapping up. If you have any questions or comments feel free to leave them below! Thanks!

A Visit to UAB Huntsville Campus

Hello again! My visit to UAB Huntsville campus allowed me to experience an additional day of community service with Children's sickle cell clinic. Patients travel to the Huntsville clinic from all around the northern Alabama area to see a specialist.

For this day of service I was able to perform vitals on each patient and help place them in their room, which allowed me to see the ranges of patients in age and disease severity. One observation that I noticed was how small the children were compared to their siblings. Sickle cell disease can delay growth after about one year of age, presenting as shorter or thinner than other children. Puberty may also be delayed. Most children will catch up with their friends after adolescence, however they must keep themselves healthy by eating well and staying hydrated.

The Sickle Cell Foundation was also present at the Huntsville Clinic. They provide educational sessions in the form of videos, lectures, and quizzes for the patient and parents. The goal is to offer additional support to the families by providing patient enrichment services. A great website for support groups and education about sickle cell, and ways to help can be found through the Sickle Cell Disease Association of America.

Again the experience was very rewarding and allowed an opportunity to interact while gaining information for my service learning project, which is now coming to a close. In my last posts I will discuss my final academic project (a pretest/post test), as well as my conclusion, rewards, and challenges of the experience.

A Visit to the Montgomery Sickle Cell Clinic

Hello! In addition to my academic learning, I have gained experience in civic engagement and community service through the traveling sickle cell clinic. The clinic travels to surrounding cities providing patients a chance to meet with their hematology specialist team. There are many benefits to this service including convenience for the families, cost effectiveness, enhancing care with the primary care provider, and many others. My first clinical experience was at UAB Montgomery Health Care System.

The clinic team sees a variety of patients, ranging from birth to nineteen years. Most patients are referred to the Children's clinic by their pediatrician. Most clinics there is a representative from the Sickle Cell Foundation that provides additional educational sessions, information, and videos on various topics.

During my clinic I shadowed Kristen with two patients and it illustrated several points for me.  I have tried to condense my experience into the most important points below.

• The severity of illness ranges on a spectrum depending upon the type of sickle cell disease (discussed in earlier post), treatment, and the individual. Some patients are seen once a year with no complications, while others are in the hospital almost every week.
• Having a child with a chronic illness changes the entire family system. The families were a source of knowledge to me about not only the disease process but the emotional experience as well. 
• Complications can start early in life. One ten year old patient was at clinical risk for stroke based upon transcranial doppler results. It was hard for me to imagine what it must feel like to worry about stroke prevention in your elementary student. 
• Despite all the hardships and health complications, they are still children. Giggling, playing, "I hate homework" children. They were a joy to be around.

Overall it was a terrific experience that allowed me to move beyond the book work and help with patients. I enjoyed meeting patients and their families. While my background research was important I feel that I learned much more in the community setting gaining experiential knowledge.

Thanks for reading!

Project #1 Updated

My original post has been updated with more information! I was in holiday weekend mode when I posted it. I think that happens to all of us sometimes. I wanted to add more information about heath literacy and some sample glossary questions, as well as a link to further information. There is more for you now if you are interested. Just wanted to let everyone know! Hope you had a safe Independence Day.

Project #1

Now that I have addressed the basics of sickle cell disease and treatments I would like to introduce the work of my service learning project.

As I have mentioned before I am partnered with Kristen Osborn, a pediatric nurse practitioner at Children's Hospital. We have agreed to fulfill my service learning hours by alternating clinical experience days and written projects for the NEXT step educational program for 10-12 year old patients. Through her work, Kristen found that when she began approaching teenagers with health education sessions background knowledge was lacking, and so the NEXT step project began. It is a way to provide a basline amount of knowledge to preteens in preparation to teach them about the transition to adult care later. Once they are a teenager it is important to begin to give them autonomy over their health care, as they will transition from pediatric care. Topics to increase autonomy include medication compliance, management of crisis, treatment information and options, navigating a healthcare setting, as well as how to transition to an adult with a chronic health condition- all while being in high school, which brings its own set of pressures. Overall it is a big topic to tackle but incredibly important work.

My first project for the NEXT step booklet was to research health literacy and design a glossary for the pre-adolescents.  It was important to understand the educational level and ensure that the glossary was developed on an age appropriate level.  I was forced to find a balance between providing information that was appropriate and making sure not to "dumb it down" too much. These children have been in the health care system for a long time and are not small children anymore (according to them). It was important to consider this patient perspective and respond accordingly.

Health literacy encompasses the ability to understand health information, on prescription bottles, appointment cards, pharmaceutical information, etc. It is a huge topic and relevent when focusing on patient/family centered care. There are several populations more vulnerable including the elderly, low income populations, minorities, those with chronic disease, and immigrant populations. Sickle cell patients may fall into an additional category beyond having a chronic disease. Several organizations are committed to researching and translating health literacy products into clinical practice. Since this topic could take a million more posts, feel free to leave questions here, or visit the National Network of Libraries of Medicine's health literacy page.

Overall the glossary was thirty-four words ranging from symptoms of illness to medications. Below is a sample of some of the words. Think about how you would define these.

Abdominal Ultrasound- A procedure that makes pictures of organs, such as the stomach.

Acute Chest Syndrome (ACS)- Illness that affects the lungs, and may include fever, chest pain, cough, and shortness of breath

Anemia- condition where the body does not have enough healthy red blood cells, which deliver oxygen to the body.

Avascular Necrosis- bone death caused by low blood flow to the area

Bilirubin- made when the liver breaks down old blood cells.

Blood Transfusion- receiving blood, or blood products, by IV (intravenous)

Overall, it was a great learning experience in working with educational materials for adolescents. My next update will be based around my first clinical day with the sickle cell traveling clinic.

Thanks for reading!

Treatments

Treatment

Sickle cell disease has no cure, as it is a genetic blood disorder. However there are some treatments that help to eliminate complications and episodes of pain. Treatments for pain include mild analgesics, oxygen therapy, and hydration. Often servere pain requires hospitalization and opioid analgesics.

Severe cases of sickle cell can be treated with hydroxyurea. This medication was originally used as a cancer drug, but has shown results in other patients. Hydroxyurea interrupts DNA synthesis, and essentially stimulates the body to produce more fetal hemoglobin. This is beneficial to sickle cell patients because it increases the amount of normal hemoglobin in the body, decreasing complications associated with the abnormal hemoglobin and abnormal cell shape.

Additional treatments are necessary to prevent and treat infections. Some patients require a daily dose of antibiotics as a preventative measure. Additional prevention measures are flu and pneumonia vaccines remaining up to date.  Regular health care appointments with a primary care provider, as well as a specialist is incredibly important for this population.

For more information on treatment check out the sickle cell anemia page on the National Heart, Lung, and Blood Institute.