Transitioning: Transitioning: A Quest for IndependenceA Quest for Independence

Presented by:Presented by:

Mary Ann Cardenas, RNMary Ann Cardenas, RN

Hemophilia Nurse CoordinatorHemophilia Nurse Coordinator

All Children’s HospitalAll Children’s Hospital

St. Petersburg, FLSt. Petersburg, FL

Definition:Definition:

Transitional care is a process that attends to Transitional care is a process that attends to the medical, psychological, social and the medical, psychological, social and

educational-vocational needs of adolescents educational-vocational needs of adolescents as they move from child-oriented lifestyles as they move from child-oriented lifestyles

and systems.and systems.

““The ease of transition for a The ease of transition for a child is dependent on the child is dependent on the

parental approach to parental approach to transition”transition”

Important things to emphasize:Important things to emphasize:

Know type of bleeding disorderKnow type of bleeding disorder Know what product they use Know what product they use Know what dose to useKnow what dose to use Know their inhibitor historyKnow their inhibitor history Know their target jointsKnow their target joints Know their allergiesKnow their allergies Know how to handle an emergencyKnow how to handle an emergency

Learning to self infuse promotes a sense of Learning to self infuse promotes a sense of control and independence for the teen, also control and independence for the teen, also provides more freedomprovides more freedom– Camping (Boy Scouts, Girl Scouts, 4H, etc)Camping (Boy Scouts, Girl Scouts, 4H, etc)– Field tripsField trips– Overnight with friendsOvernight with friends– Travels away from home (grandparents, etc)Travels away from home (grandparents, etc)

Ages 13 – 15 yearsAges 13 – 15 years

Be able to name his/her bleeding disorder and Be able to name his/her bleeding disorder and describe the level or severity accurately in his or her describe the level or severity accurately in his or her own words, and understand what that meansown words, and understand what that means

Describe symptoms of a bleed (ie: joint) and how a Describe symptoms of a bleed (ie: joint) and how a bleed should be treatedbleed should be treated

Begin maintaining their own infusion log, mixing Begin maintaining their own infusion log, mixing factor, and to self-infusefactor, and to self-infuse

Gaining confidence in learning to manage their own Gaining confidence in learning to manage their own carecare

Deciding when & who should know, among their Deciding when & who should know, among their circle of friends, of their bleeding disordercircle of friends, of their bleeding disorder

Ages 16 – 18 yearsAges 16 – 18 years Understand why safe physical activity and exercise are Understand why safe physical activity and exercise are

important to their healthimportant to their health More independent management of their care:More independent management of their care:

– Ordering & managing factor supplyOrdering & managing factor supply– Scheduling appointments, discussing their care with the Scheduling appointments, discussing their care with the

physicianphysician Know what to pack when traveling (medication, supplies)Know what to pack when traveling (medication, supplies) Begin to understand their insurance and changes that may Begin to understand their insurance and changes that may

occur at age 18occur at age 18 Career planning (college vs. vocational)Career planning (college vs. vocational)

– Applying for Scholarships, AssistanceApplying for Scholarships, Assistance Preparation for transition to an adult HTCPreparation for transition to an adult HTC

Ages 19 – 21 yearsAges 19 – 21 years Going to college Going to college Things to consider:Things to consider:

– Distance from classrooms to dorm roomsDistance from classrooms to dorm rooms– Where and how to store factorWhere and how to store factor– Where and how to deliver factorWhere and how to deliver factor– Tracking factor inventoryTracking factor inventory– Nearest HTC, ERNearest HTC, ER– Medic Alert, ER letter, Travel letterMedic Alert, ER letter, Travel letter– Whom to inform about your bleeding disorderWhom to inform about your bleeding disorder

» Health Service Dept, classmatesHealth Service Dept, classmates

Selecting an HTCSelecting an HTC Age discontinued from parents insurance?Age discontinued from parents insurance? Out-of-state insurance coverageOut-of-state insurance coverage

Ages 19 – 21 years, cont’d:Ages 19 – 21 years, cont’d:

Selecting a vocationSelecting a vocation Understanding the different types of insurances, Understanding the different types of insurances,

knowing how to pick a planknowing how to pick a plan Knowing what kind of questions to ask an Knowing what kind of questions to ask an

insurance provider:insurance provider:– How much are the co-payments and deductibles?How much are the co-payments and deductibles?

– Does the policy have a lifetime maximum on benefits?Does the policy have a lifetime maximum on benefits?

– Are factor concentrates covered by the insurance?Are factor concentrates covered by the insurance?

>21 years of age>21 years of age

CareerCareer MarriageMarriage

– Genetic testingGenetic testing ChildrenChildren HealthHealth

– Continue comprehensive care at an HTCContinue comprehensive care at an HTC– Continue to care & manage their bleeding Continue to care & manage their bleeding

disorder disorder

Things to Consider:Things to Consider: What part does their bleeding disorder play in What part does their bleeding disorder play in

their life?their life?» Do they attend a bleeding disorder Camp?Do they attend a bleeding disorder Camp?» Do they attend educational events to learn more about their Do they attend educational events to learn more about their

bleeding disorder?bleeding disorder?» How often do they interact with others who have a bleeding How often do they interact with others who have a bleeding

disorder?disorder?

Building Self-confidenceBuilding Self-confidence The pros and cons of disclosing a bleeding The pros and cons of disclosing a bleeding

disorderdisorder» It’s a personal decisionIt’s a personal decision» Easier to explain why certain activities are to be avoidedEasier to explain why certain activities are to be avoided

In Summary:In Summary:

Remember to build his/her involvement with their Remember to build his/her involvement with their healthcare in age-appropriate increments over healthcare in age-appropriate increments over time.time.

The teen years can be especially challenging The teen years can be especially challenging because of their desire to assert their because of their desire to assert their independence.independence.

Help them understand how to avoid unnecessary Help them understand how to avoid unnecessary risksrisks

They need your supervision, education and They need your supervision, education and support to successfully transition to adult life.support to successfully transition to adult life.

Any Questions?Any Questions?