Child Life Month 2018

​WHAT IS CHILD LIFE? WHAT IS A CERTIFIED CHILD LIFE SPECIALIST? 
​AS A CURRENT CHILD LIFE MAJOR, I AM OFTEN ASKED WHAT A CERTIFIED CHILD LIFE SPECIALIST IS AND WHAT DO THEY DO? MANY FAMILIES DON’T KNOW WHAT A CHILD LIFE SPECIALIST IS UNTIL THEY ENTER IN A PEDIATRIC HOSPITAL SETTING FOR A HOSPITAL STAY OR VISIT. A CHILD LIFE SPECIALIST WORKS WITH CHILDREN AND THEIR FAMILIES GOING THROUGH A HOSPITAL EXPERIENCE BY PROVIDING PRE-HOSPITAL TOURS, PROCEDURE PREPARATION AND SUPPORT, SIBLING SUPPORT, AND BEREAVEMENT WORK.

CHILD LIFE SPECIALISTS EDUCATE THE FAMILY UNIT ABOUT PROCEDURES AND DIAGNOSIS THAT MAY BE UNFAMILIAR, OR CAN BE TOO COMPLICATED TO UNDERSTAND AT FIRST. FOR CHILDREN AND SIBLINGS, CHILD LIFE SPECIALISTS EXPLAIN WHAT IS GOING ON IN DEVELOPMENTALLY APPROPRIATE WAYS, AND USE WORDS AND PHRASES THAT THE CHILDREN WILL EASILY UNDERSTAND. CHILD LIFE SPECIALISTS ALSO UTILIZE PLAY AS A FORM OF SUPPORT AND AS A WAY TO SPEAK TO CHILDREN, SINCE PLAY IS THE UNIVERSAL LANGUAGE OF KIDS. FOR PARENTS, THEY ACT AS A LIAISON BETWEEN DOCTORS, NURSES, AND OTHER MEDICAL STAFF. THEY ALSO PROVIDE INFORMATION AND GIVE SUPPORT AND GUIDANCE AS WELL. 

CHILD LIFE SPECIALIST ARE A KEY PART OF THE MEDICAL TEAM. ONE OF THE PRIMARY TASKS FOR CHILD LIFE SPECIALISTS IS TO EASE ANXIETY ABOUT A PROCEDURE BY GAINING A FAMILIAR UNDERSTANDING OF THE EQUIPMENT AND THE ENVIRONMENT. FOR EXAMPLE, IF A CHILD HAS TO GET AN INTRAVENOUS TREATMENT, BUT HAS A FEAR OF NEEDLES FROM PREVIOUS EXPERIENCES, CHILD LIFE WOULD PROVIDE A GREAT SUPPORT SYSTEM TO EXPLAIN HOW THE IV WORKS. THEY WOULD SHOW THEM THE PIECES OF MEDICAL EQUIPMENT USED, AND DISCUSS THE TERMS THAT A MEDICAL STAFF MEMBER MIGHT USE THROUGH MEDICAL PLAY. CHILD LIFE SPECIALISTS COULD ALSO PROVIDE DISTRACTION TOOLS SUCH AS WATCHING A SHORT VIDEO ON AN IPAD, SINGING A SONG, OR USING A TOY TO PLAY WITH. EASING THE CHILD’S ANXIETIES DURING AN UNFAMILIAR PROCEDURE THE FIRST TIME CAN HELP WITH FUTURE EXPERIENCES WITH THOSE PROCEDURES.

HOW CAN IT BENEFIT CHILDREN WITH HEMOPHAGOCYTIC LYMPHOHISTIOCYTOSIS (HLH)?

FOR CHILDREN GOING THROUGH HLH, THERE CAN BE MANY CONFUSING PROCEDURES AND PIECES OF MEDICAL EQUIPMENT THEY MAY COME IN CONTACT WITH. CHILD LIFE CAN BE BENEFICIAL FOR ANY PATIENT GOING THROUGH HLH. AS A COMMUNITY, MOST OF US KNOW THAT HLH IS SOMETHING YOU ARE NOT AWARE OF UNTIL YOU ARE DIAGNOSED. FOR PARENTS OF CHILDREN GOING THROUGH HLH TREATMENT, THIS CAN BE A SCARY AND CONFUSING TIME TO TRY AND MAKE SENSE OF WHAT IS GOING ON WITH THEIR CHILD AND HOW THEY CAN BE SUPPORTIVE DURING THIS TIME. CHILD LIFE CAN BE A RESOURCE FOR PARENTS AND PATIENTS WHO NEED THIS EXTRA SUPPORT DURING A HOSPITALIZATION FOR HLH.

CHILD LIFE CAN HELP WITH AN INITIAL DIAGNOSIS OF HLH AND EXPLAINING TO PARENTS THE DIFFERENCE BETWEEN FAMILIAL AND SECONDARY HLH. DEPENDING ON WHICH TYPE A CHILD HAS, THIS CAN DIRECT THE CONVERSATION TO WHAT TYPES OF TREATMENT THEIR CHILD IS LOOKING AT GOING THROUGH. IF THE DIAGNOSIS IS FAMILIAL HLH, THEY WILL NEED TO DISCUSS WITH BOTH THE FAMILY AND THE PATIENT ABOUT ONE OF THE PRIMARY TREATMENTS BEING A BONE MARROW TRANSPLANT. FOR SECONDARY HLH, THEY CAN HAVE THE DISCUSSION ABOUT A BONE MARROW TRANSPLANT BEING AN OPTION, BUT ONLY IF IT IS DECIDED BY THE PATIENT’S DOCTORS, AND THE CURRENT DRUG AND CHEMO TREATMENT PROTOCOLS THAT HAVE SHOWN SUCCESS.

BOTH TYPES OF THE DISEASE CAN EASILY BE BROKEN DOWN TO EXPLAIN TO CHILDREN. FOR EXAMPLE, HLH COULD BE DESCRIBED AS, “A DISEASE THAT AFFECTS THE BLOOD CELLS IN YOUR BODY. IMAGINE YOUR RED BLOOD CELLS ACTING LIKE THE PAC-MAN ARCADE GAME. THEY ARE HUNGRY AND THEY ARE EATING OTHER BLOOD CELLS THAT LIVE IN YOUR BODY. THE DOCTORS AND NURSES ARE GOING TO DO PROCEDURES AND GIVE YOU SOME MEDICINES TO HELP YOUR BODY FEEL BETTER. SOME OF THE PROCEDURES MIGHT NOT BE FAMILIAR TO YOU, BUT I WILL HELP EXPLAIN THEM AND MAKE SURE YOU ARE COMFORTABLE WHEN THEY DO THEM.” A CHILD LIFE SPECIALIST WOULD DISCUSS MORE IN-DEPTH QUESTIONS WITH THE PARENTS, AND HELP ANSWER ANY QUESTIONS OR CONFUSIONS THEY MAY HAVE ABOUT THIS DISEASE.

FOR THE PEDIATRIC PATIENT, CHILD LIFE CAN USE MANY DIFFERENT TOOLS TO HELP EXPLAIN WHAT HLH IS AND HOW IT IS AFFECTING THE CHILD’S BODY. ONE EXAMPLE OF SHOWING WHAT HLH IS LIKE IS AN ACTIVITY CALLED BLOOD SOUP (CHECK IT OUT!). THE PATIENT AND THE CHILD LIFE SPECIALIST CAN USE RED HOT CANDIES FOR THE RED BLOOD CELLS, MINI MARSHMALLOWS FOR WHITE BLOOD CELLS, CORN SYRUP FOR PLASMA, AND DIFFERENT COLORED SKITTLES OR SPRINKLES TO REPRESENT THE T-CELLS, MACROPHAGES, AND PLATELETS. BY MIXING TOGETHER ALL THESE INGREDIENTS IN A BAG OR JAR, WE CAN VISUALLY SHOW A CHILD HOW THEIR BODY LOOKS DIFFERENT THAN A NORMAL HEALTHY PERSONS BODY WHILE ALSO UTILIZING A FUN ACTIVITY TO GET THEM ENGAGED. THIS IS A GREAT ACTIVITY THAT ALLOWS THE CHILD TO VISUALIZE HOW A NORMAL PERSON’S “BLOOD CHEMISTRY” SHOULD LOOK VERSUS SOMEONE WHO IS SICK. THIS ACTIVITY IS USUALLY USED FOR SHOWING WHAT CANCER IS LIKE, BUT IT CAN BE MODIFIED TO BE USED FOR HLH PATIENTS. WE CAN ALSO INCLUDE SIBLINGS IN THIS ACTIVITY AS WELL AS PARENTS SO THAT THEY CAN VISUALLY SEE THIS TOO.

DID YOU HAVE A CHILD LIFE SPECIALIST WHEN YOU WERE PATIENT? IF SO, TALK ABOUT IT.

WHEN I WAS HOSPITALIZED, I WAS 15 YEARS OLD AND FOR CHILD LIFE, THEY PRIORITIZE PATIENTS BASED ON AGE AND DEVELOPMENTAL NEEDS. I WAS NOT A PRIORITY AT THE TIME, SO I NEVER EXPERIENCED CHILD LIFE DURING MY 6 WEEK STAY. BUT, SINCE I WAS ABLE TO ADVOCATE FOR MYSELF, I HAD MANY CONVERSATIONS WITH THE MEDICAL STAFF ABOUT MY TREATMENT PLAN AND THE PROCEDURES I WAS GOING THROUGH. IN RETROSPECT, THERE WERE SOME TIMES THAT I FEEL I WOULD HAVE BENEFITED FROM CHILD LIFE SERVICES DUE TO FEARS FORMING WHILE GOING THROUGH SOME PROCEDURES. MANY TIMES, HLH PATIENTS GET A PORT (AN IMPLANTABLE VENOUS DEVICE FOR DRUG INJECTIONS OR BLOOD SAMPLES), OR PICC (PERIPHERALLY INSERTED CENTRAL CATHETER) LINE FOR PROLONGED CHEMOTHERAPY AND MEDICINE ADMINISTRATION. THESE CAN BE INTIMIDATING IF A PATIENT HAS NEVER SEEN ONE BEFORE OR HAD ONE INSERTED. IF I WOULD HAVE RECEIVED SUPPORT FROM A CHILD LIFE SPECIALIST WHILE RECEIVING ONE OF THESE, IT WOULD HAVE BEEN A MUCH BETTER OUTCOME FOR ME BECAUSE I STILL DISLIKE THE FEELING OF BEING TOUCHED ON THE INSIDE OF MY ARM. ALTHOUGH I HAD A SUCCESSFUL TREATMENT OF THIS RARE BLOOD DISEASE, MY LACK OF CHILD LIFE SERVICES IS WHAT DRIVES ME TO BECOME A FUTURE CHILD LIFE SPECIALIST. I WANT TO ENSURE THAT THE PATIENTS THAT I IMPACT AND WORK WITH FEEL AS COMFORTABLE AS POSSIBLE. BY WORKING CLOSELY WITH THE PEDIATRIC PATIENT, THEIR PARENTS, AND SIBLINGS, THEY WILL LEAVE WITH A POSITIVE HOSPITAL EXPERIENCE AND BETTER UNDERSTANDING OF THEIR TREATMENT.

​HOW CAN SOMEONE ASK ABOUT CHILD LIFE SPECIALIST OR REQUEST SOMEONE IF THE HOSPITAL HAS NOT PROVIDED ONE YET?

​MOST PEDIATRIC HOSPITALS WILL INFORM THE CHILD LIFE SPECIALIST ABOUT NEW PATIENTS WHO ARE ADMITTED OR ARE COMING INTO THE PEDIATRIC EMERGENCY DEPARTMENT. THE CHILD LIFE SPECIALIST CAN BE A FAMILIAR FACE FOR THIS FIRST INTERACTION WHEN COMING INTO THE ED WHILE DOCTORS, MED STUDENTS AND NURSES WORK ON THE PATIENT. WHILE DOCTORS WORK ON THEIR CHILD, PARENTS CAN ASK IF THERE ARE GAMES OR TOYS AVAILABLE AND CHILD LIFE OR OTHER MEDICAL STAFF CAN PROVIDE THESE ITEMS. USUALLY WHEN A PATIENT IS BEING MOVED TO INPATIENT FOR FURTHER TREATMENT, CHILD LIFE WILL BECOME INVOLVED WITH THIS TRANSITION PROCESS AND HELP SETTLE THE PATIENT AND FAMILY IN THEIR HOSPITAL ROOM.

IF THE PATIENT HAS NOT RECEIVED ANY SUPPORT FROM A CHILD LIFE SPECIALIST IN THE PEDIATRIC HOSPITAL SETTING, THE PARENT CAN ASK ANOTHER MEDICAL PROFESSIONAL TO HAVE CHILD LIFE SERVICES STOP BY AND WORK WITH THE CHILD IF THEY ARE STRUGGLING TO ADJUST WITH THE HOSPITAL WITH THE SUPPORT OF OTHER MEDICAL STAFF.

HOW WILL LIAM’S LIGHTHOUSE FOUNDATION HELP WITH CHILD LIFE ACTIVITIES OR INFORMATION IN THE FUTURE?

CHILD LIFE SPECIALISTS AND LIAM'S LIGHTHOUSE FOUNDATION CAN WORK TOGETHER ON ADVOCATING AND PROVIDING RESOURCES FOR THIS COMMUNITY WHO OFTEN FEELS ALONE WITH AN INITIAL DIAGNOSIS. OUR ORGANIZATION CAN REACH OUT TO THE CHILD LIFE SPECIALISTS AT CINCINNATI CHILDREN’S AND PROVIDE THEM WITH OUR RESOURCES TO GIVE TO PATIENTS AND THEIR FAMILIES WHEN THEY RECEIVE AN HLH DIAGNOSIS.

LIAM’S LIGHTHOUSE FOUNDATION HAS OPENED UP AND EXPANDED TO FAMILIES GOING THROUGH HLH ALL OVER THE COUNTRY AND EVEN ACROSS SEAS. WITHOUT THIS SUPPORT SYSTEM AND COMMUNITY WE HAVE BUILT THUS FAR, IT SOMETIMES CAN FEEL IMPOSSIBLE TO MAKE IT THROUGH A DIAGNOSIS THIS DIFFICULT. WITH CHILD LIFE AND LIAM’S LIGHTHOUSE FOUNDATION WORKING TOGETHER, WE CAN HELP FAMILIES THAT BATTLE HLH FIGHT WITH A COMMUNITY BY THEIR SIDE.

#ChildLife