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How Far Would You Go to Save Your Child? … Breakthrough Pediatric Cancer Treatment & HIV Injections

27 Nov

A cancer diagnosis is never easy to hear, especially when it pertains to a little one who, if life goes as planned, should have a lifetime ahead of them. While the prognosis and survival rate for childhood leukemia has improved over the years (nearly quadrupling since the 1960’s) many families still are left to make some very difficult decisions. One of the more interesting treatment breakthroughs from a scientific standpoint, especially as I plan to apply to medical school next fall, is the idea of modifying the Human Immunodeficiency Virus (HIV) to treat / cure cancer. While controversial to be sure, this new treatment plan is giving families another last shot option to save their child’s life. It begs the question, how far would you go?

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Child Life, the Robin to a Doctor’s Batman

14 Jul

photo copy 2Last week, I had a really cute conversation with a 9 year old male patient during my morning assessment rounds. He had been admitted for a few days, but feeling quite well. As you can imagine, he was very bored. It was during my morning check-in with him that a really fun, “lightbulb moment” happened. The following is a synopsis of our conversation:

Child – “So what is a Child Life Specialist (my job) anyways…”

Me –  “Well, we’re kind of like the right hand helpers to doctors.”

Child – “Sooooo,”   *thinks*   you’re kinda like their side-kick?

 Me – “In a way, yeah. If the doctor comes to check-in on you & they realize they might need to do something scary, like give you a new medicine, use machines to check how your body is feeling, or use needles … they might ask me to come in 1st to help you get ready so it’s not as scary anymore.

 Child – *thinks some more* … “Soooo, you’re like the Robin to the doctor’s Batman then?” .. *smiles brightly*

Me – “Exactly” *returns smile*

When working with school-age children, especially in the medical setting, it’s important to keep your language simple and concrete. For this child, Batman and Robin were a familiar team working together to keep the inhabitants of Gotham City safe from those who meant to hurt or cause pain. After taking a few seconds to reflect, I saw his line of thinking. As a Child Life Specialist, we are charged to advocate and even protect children from as many of the stressors related to the medical environment as possible. We work alongside other medical clinicians, trying our best to keep fear provoking experiences at bay. In the end, the correlation between the interrelated roles of both superheroes and medical staff made sense to this child and ultimately, it helped to transform what could have been a somewhat difficult explanation into a simple and very cool conversation. Salute to me fellow Child Life Specialists, superheroes changing the lives of children one interaction at a time!

Hurray for Donations!!

8 Mar

Building a brand new one person Child Life program is no easy feat, especially when your program is starting from the absolute basics and just everything is grant / donation funded However, awesome donations from hardworking, selfless organizations like “The Pinwheel Project” make things SO much easier! This new doctor kit will be a great addition to my play therapy / teddy bear clinic stash!

Thank you Sandee & Janice, Founders of “The Pinwheel Project,” for sending two boxes filled with pure joy! The children and I definitely appreciate it … The work you do is amazing! If you are reading this and are interested in making donations to your local children’s hospital or pediatric doctor’s office, plastic / wipe-able toys are usually the best choice as it’s easy to clean between usage. The simplest things can bring a smile to a hospitalized child’s face .. Happy Child Life month everyone! : ])

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Improving Patient Satisfaction: Quick Tips for Medical Providers

25 Nov

Joint Commission (JCAHO) reviews & (HCAHPS Scores) are key tools both medical departments and patients alike use to analyze the overall success of a medical organization. As the frustration over healthcare costs and treatment continue to rise, these evaluation instruments are becoming increasingly important as patients nationwide are formally documenting their medical experience and beginning to include these tools in their decision-making process.

Patients and families are now heading online, reviewing the experiences of others, and “comparison shopping.” What differentiates your private practice from the doctor next door? How do you improve the overall experience for patients you serve, on a limited budget? Through my work as a Child Life Therapist, the following are just three quick tips which have been utilized and proven to not only ease course of treatment, but improve patient satisfaction as well.

Improve waiting times: One of the single most important ways to improve the patient experience begins in the waiting room. In emergency rooms, clinics, and even private practice settings some wait time is anticipated. However, excessively long wait times can very quickly lead to loud, angry, frustrated patients. Additionally, in situations such as this, patients who attempt to speak with medical staff are often kept in the dark as to the cause(s) of “the hold up.”

While rushing through patient visits or divulging private information (as explanations to waiting patients) are not the answer, there are a few helpful solutions. Many medical providers have reworked the way in which patients are scheduled (to avoid overcrowding). Treatment clinics are developing and implementing mechanisms to alert patients to unexpected changes in wait time. These mechanisms also come with a “script” (simple prompts) for staff when engaging patients regarding wait time. Finally, arriving on time for scheduled appointments is also key. Though you would think it would go without saying, it’s surprising how many patients are left twiddling their thumbs in the waiting rooms, all while the medical provider is not in the office or on hospital premises.

Distraction for Children: This distraction can come in the form of small play items to entertain children while they wait, or formal therapeutic distraction / procedural support from a Child Life Therapist for frightened children once they are called into the exam room. Simply put, calm children many times translates to calmer parents as well.

Past the Clinical Touch: In my work experience, patients who reported most positively on their medical experience often did so when medical providers appeared to go “above and beyond” standard clinical expectations. Examples of this include, taking a quick moment to: form a personable rapport, explain complicated medical jargon, involve the patient / family fully in treatment decisions, respect cultural differences, or provide / refer holistic treatment options.

Overall, patients report higher satisfaction scores when they are kept informed, given choices, and treated as a whole individual whose physical treatment and emotional needs are equally important. Ultimately, when in doubt, the tenants of Patient / Family Centered Care are a wonderful guide.

“Things Fall Apart:” When a Tough Economy, Anxiety, & Medical Stressors Collide

7 Nov

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For many families, life during these hard economic times can be full of stressful triggers. Putting food on the table, paying the house note, keeping the lights on, getting gas into the car, maintaining your social/love relationships, looking for new work .. all of which can be anxiety provoking. While keeping this scenario in mind, imagine now adding the serious stressor of having a loved one admitted to the hospital or dealing with a new medical illness. It can be enough to literally make you want to pull your hair out! Sadly, this is the reality for many families around the country. If any of this sounds familiar, rest assured that there are resources to help.

1: Sound Mind: Within many hospital settings, there are often well-trained psychologists on staff who are ready and willing to help. They can provide a safe, non-judgmental outlet for you to vent, talk through your fears, address personal challenges, and brainstorm on coping strategies that best fit you. Best of all, these medical psychologists and counseling staff personnel are specially trained to work within the hospital setting to serve those who are affected by the pressures of health concerns. They can offer tools to not only decrease your heightened emotional state, but also ways to promote engaging ill loved ones in a positive way without experiencing what is known as “caregivers fatigue” (when a loved one caring for another becomes physically and emotionally drained).

2: Sound Body: Did you know that many hospitals are now offering spa services? YES! Unbeknownst to many patients and families, a growing number of hospitals around the country are offering holistic services such as: yoga, massage, acupuncture, meditation, dance, and music therapies to name a few. Even beauty enhancement services are becoming increasingly common to address the need of boosting emotional morale. While the primary focus remains treating the illness and ensuring true health, who doesn’t feel better after a nice massage or a few beauty regimes? It reminds families that they are still human and can have a big normalizing effect for everyone who participates.

3: Sound Life: Now that the mind and body have been cared for, what services are available for the other non-medical stressors? With the help of human services, social workers do more than simply help with discharge. They can: work with your doctor and insurance company to ensure care is financially covered as well as make community referrals to assist with securing key needs (such as housing, food, utility support, etc).

In the end, though things may seem bleak, help IS indeed available. Please, if things seem unbearable, reach out to a friend, loved one, doctor, etc … you don’t have to struggle through life’s rough spots alone.

Social Networking: Going to the Next Frontier

7 Nov

In the past ten years, the explosion various social networks have been remarkable. While used for many different reasons, social networking can also have a strong therapeutic value as well. Through monitored social networking and communication applications (such as FaceTime and Skype), those facing isolation due to prolonged hospitalization have the opportunity remain connected to friends and loved ones between visits.

This use of technology, can be especially helpful for children and adolescents. During this stage of development, youth typically are very close to their peers and thrive during socialization. Via this use of technology, children can have a safe vehicle to express fears, stay connected with ongoing life events at home/school, stay connected with siblings, or simply enjoy non-medical conversations with friends who understand them. Social Networking can not only provide much-needed opportunities for peer-to-peer interactions, but overall, it is a great and familiar way for young people to normalize their hospital experience and connect, gaining much-needed emotional support in the process. Ultimately, social networking can be a good choice for the entire family. As seen often times through my work, as children begin to better cope with hospitalization, so do adult caregivers and family members. Stress begins to wain and a return to increasingly positive interactions can resume.

Medication – Quick tips & Advice for Parents

7 Nov

For many caregivers, the thought of using medical strength medications (often called meds) on children can be somewhat nerve-wracking. Question such as: “WHAT were those pills called again?” .. “HOW much did the nurse say she was planning to give my child?” .. “Is this medication REALLY necessary?” or  ”What if my child just doesn’t want to take it?” are just some of the common questions parents often ask. Below are a few quick tips that can take the pressure off of stressful medicine related situations.

Bring comfort items from home: These items can be life savers in a tense situation, especially when a child is feeling scared about a new hospital environment or upcoming test/procedure. Through my work as a Child Life Therapist, I’ve found that a comforted child soothed by a familiar security or play item, may require less anti-anxiety/or calming medicine during a
hospital stay or prior to a procedure.

Involvement: For older school-aged children and adolescents, getting them involved in their care through honest conversations and decision making (when possible) can be a great way to have them “buy into” and take ownership of their treatment. This is also helpful for a child who is refusing to take their medication.

Talk it Out: Ask medical staff to take a moment and explain to your child (depending on age) the medicine’s “job,” how it will work in their bodies, why its necessary, and how long will it be have to be taken. This is a great way to again, get children involved. They are more likely to cooperate with medicine taking if they have some information, as opposed to simply forcing it in their mouths or making them hold still for an IV because “I said so.” Also, by participating in the conversation, caregivers have the opportunity to also ask questions while getting a better sense of what their child understands as well.

Preparation: For some tests or procedures, depending on the age of the child, with enough preparation (such as medical play therapy) and parental support in the room, some children are able to remain calm enough where medications such as anesthesia (medicine used to cause children to sleep during procedures) are not necessary at all. Check in with your doctor, nurse, or Child Life Therapist to see if perhaps this is the case for your child.

Overall, while completely avoiding medication during a hospital stay can be very difficult, if not impossible, these four tips can help give you and your child choices and begin certain discussions with your medical team about medications.

*original image from (google images)

“At the Corner of Nervous and Concerned”

7 Nov

We all know that hospitals can feel like a large overwhelming maze filled with various departments, tons of new faces, and unnerving sights or sounds. One way which adolescents and parents with young children can become familiar with and become more knowledgeable about the medical environment, is through hospital tours. This can be especially helpful for anxious children scheduled for surgery or any procedure requiring overnight stays / hospitalization for any length of time. Not only is everyone able to see the space beforehand, but families also have the opportunity to meet key pediatric staff and ask specific questions that might not have been discussed during the doctor’s visit. Tours are also a great way to learn about rules for your particular pediatric unit, including: security concerns, visiting hours, comfort items that can be brought from home, as well as who can stay overnight with the child.

To schedule a pediatric tour for your family, contact your hospital’s Child Life or Pediatric Department to express interest.

“We’re Here to Help” – Three Medical Professionals You Should Know When Visiting the Hospital

7 Nov

Children and families can enter the medical setting for a number of reasons. These events can be both planned and unplanned. While most are well acquainted with their doctor (primary care physician), in many hospitals, there are additional staff members who can provide individualized services for families in need as well. They are able to answer specific questions, provide or coordinate much-needed resources, and frame medical information in a clear, understandable way. Listed below are three important medical professionals who can be of assistance.

1: Certified Child Life Specialist / Therapist (CCLS): These professionals, are specifically trained in child development and often work to help children and families cope once they enter the medical environment. A CCLS can utilize clinical education or play therapy sessions to explain some of the medical terms often used by other medical professionals in a developmentally appropriate way. Additionally they are able to prepare children for tests or procedures that may be stressful or scary, and even accompany kids into procedural room to provide distraction (with parents permission). Finally, a CCLS, together with the larger
pediatric department, often coordinates fun activities and programming meant to make a hospital stay more enjoyable.

2: Social Worker (SW / LMSW): These professionals are also able to provide clinical counseling sessions for patients in need. Additionally, a social worker can also help coordinate a safe discharge after hospitalization by working with the medical team to ensure specific resources (such as prescriptions, home care, medical equipment, and ongoing emotional support) are
in place within a family’s community when the go home.

3: Patient Advocates: These professionals are able to help families who find themselves in difficult situations and are unsure of their rights while in the hospital. Patient advocates are able to: provide a written version of your particular hospital’s “Patient’s Bill of Rights” and explain its meaning, ensure that all services are provided in your primary language, and even advocate on behalf of a family if they become uncertain of the level of care they are receiving.

Overall, as medical staff, we are here to help as best we can. When in doubt on where to turn, a nearby medical receptionist or clerk can point you in the right direction or alert the appropriate personnel to your needs.