Transitioning: A Quest for Independence Presented by: Mary Ann Cardenas, RN Hemophilia Nurse Coordinator All Children’s Hospital St. Petersburg, FL

Definition: Transitional care is a process that attends to the medical, psychological, social and educational-vocational needs of adolescents as they move from child-oriented lifestyles and systems.

“The ease of transition for a child is dependent on the parental approach to transition”

Important things to emphasize: Know type of bleeding disorder Know type of bleeding disorder Know what product they use Know what product they use Know what dose to use Know what dose to use Know their inhibitor history Know their inhibitor history Know their target joints Know their target joints Know their allergies Know their allergies Know how to handle an emergency Know how to handle an emergency

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

Ages 13 – 15 years Be able to name his/her bleeding disorder and describe the level or severity accurately in his or her own words, and understand what that means Be able to name his/her bleeding disorder and describe the level or severity accurately in his or her own words, and understand what that means Describe symptoms of a bleed (ie: joint) and how a bleed should be treated Describe symptoms of a bleed (ie: joint) and how a bleed should be treated Begin maintaining their own infusion log, mixing factor, and to self-infuse Begin maintaining their own infusion log, mixing factor, and to self-infuse Gaining confidence in learning to manage their own care Gaining confidence in learning to manage their own care Deciding when & who should know, among their circle of friends, of their bleeding disorder Deciding when & who should know, among their circle of friends, of their bleeding disorder

Ages 16 – 18 years Understand why safe physical activity and exercise are important to their health Understand why safe physical activity and exercise are important to their health More independent management of their care: More independent management of their care: –Ordering & managing factor supply –Scheduling appointments, discussing their care with the physician 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 occur at age 18 Begin to understand their insurance and changes that may occur at age 18 Career planning (college vs. vocational) Career planning (college vs. vocational) –Applying for Scholarships, Assistance Preparation for transition to an adult HTC Preparation for transition to an adult HTC

Ages 19 – 21 years Going to college Going to college Things to consider: Things to consider: –Distance from classrooms to dorm rooms –Where and how to store factor –Where and how to deliver factor –Tracking factor inventory –Nearest HTC, ER –Medic Alert, ER letter, Travel letter –Whom to inform about your bleeding disorder »Health Service Dept, classmates Selecting an HTC Selecting an HTC Age discontinued from parents insurance? Age discontinued from parents insurance? Out-of-state insurance coverage Out-of-state insurance coverage

Ages 19 – 21 years, cont’d: Selecting a vocation Selecting a vocation Understanding the different types of insurances, knowing how to pick a plan Understanding the different types of insurances, knowing how to pick a plan Knowing what kind of questions to ask an insurance provider: Knowing what kind of questions to ask an insurance provider: –How much are the co-payments and deductibles? –Does the policy have a lifetime maximum on benefits? –Are factor concentrates covered by the insurance?

>21 years of age Career Career Marriage Marriage –Genetic testing Children Children Health Health –Continue comprehensive care at an HTC –Continue to care & manage their bleeding disorder

Things to Consider: What part does their bleeding disorder play in their life? What part does their bleeding disorder play in their life? »Do they attend a bleeding disorder Camp? »Do they attend educational events to learn more about their bleeding disorder? »How often do they interact with others who have a bleeding disorder? Building Self-confidence Building Self-confidence The pros and cons of disclosing a bleeding disorder The pros and cons of disclosing a bleeding disorder »It’s a personal decision »Easier to explain why certain activities are to be avoided

In Summary: Remember to build his/her involvement with their healthcare in age-appropriate increments over time. Remember to build his/her involvement with their healthcare in age-appropriate increments over time. The teen years can be especially challenging because of their desire to assert their independence. The teen years can be especially challenging because of their desire to assert their independence. Help them understand how to avoid unnecessary risks Help them understand how to avoid unnecessary risks They need your supervision, education and support to successfully transition to adult life. They need your supervision, education and support to successfully transition to adult life.

Any Questions?