Addressing Independence A Life Course Model for Spina Bifida Judy Thibadeau RN, MN Health Scientist Centers for Disease Co...
Addressing Independence A Life Course Model for Spina Bifida <ul><li>This session </li></ul><ul><ul><li>Judy </li></ul></u...
The Life Course Model <ul><li>Need for life course personal development strategies for children affected by spina bifida <...
THE LIFE COURSE MESSAGE A MODEL FOR GROWING UP
  The   Life Course Message A Model for Growing Up  <ul><li>Content </li></ul><ul><ul><ul><li>Health Self Management </li>...
  The   Life Course Message A Model for Growing Up  Health Self Management <ul><li>Developmental Goal and Indicators of Ac...
The   Life Course Message A Model for Growing Up  Personal and Social Relationships <ul><li>Developmental Goal and Indicat...
  The   Life Course Message A Model for Growing Up Education, Learning, Employment <ul><li>Developmental Goal and Indicato...
  SPINA BIFIDA WEB PAGES CENTERS FOR DISEASE CONTROL AND PREVENTION HTTP://WWW.CDC.GOV/NCBDDD/SPINABIFIDA
Spina Bifida Web Pages Content <ul><li>Facts </li></ul><ul><li>Health Issues and Treatments </li></ul><ul><li>Living with ...
Spina Bifida Web Pages Content <ul><li>Living with Spina Bifida and The Spina Bifida Experience </li></ul><ul><ul><li>Newb...
Spina Bifida Web Pages Short videos <ul><li>Independence emphasized </li></ul><ul><ul><li>“ Managing Medical Care” </li></...
Spina Bifida Web Pages Short Videos <ul><ul><li>“ Managing Medical Care” </li></ul></ul><ul><ul><li>http://www.cdc.gov/NCB...
Preparations Amanda Darnley Director of  Communications and Marketing Spina Bifida Association <ul><li>National Center on ...
 
Preparations Web Site Goals <ul><li>Develop a website tool which parents of children with spina bifida and clinicians can ...
Site Information <ul><li>CDC Transition Working Group </li></ul><ul><ul><li>Spina bifida experts from across the country <...
Life Course Logic Model
Website Features <ul><li>Can be navigated by either age or topic (determined by the user) </li></ul><ul><li>User is able t...
Feedback <ul><li>Site averages over 530 visitors per month </li></ul><ul><li>Almost 850 people have saved reports </li></u...
Preparations Website Tour
Judy Thibadeau R.N. M.N.  csn2@cdc.gov  Division of Human Development and Disability National Center on Birth Defects and ...
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Addressing Independence: A Discussion of the Methodology Informing CDC’s Spina Bifida Transition Communications – Judy Thibadeau, RN, MN & Amanda Darnley

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  • What to show for the site in Spanish? Jen suggests listing the Spanish URL. Although this was a long project, the importance to this audience may simply be that the site is bilingual. Also, I would put this slide last or somewhere near the end.
  • Addressing Independence: A Discussion of the Methodology Informing CDC’s Spina Bifida Transition Communications – Judy Thibadeau, RN, MN & Amanda Darnley

    1. 1. Addressing Independence A Life Course Model for Spina Bifida Judy Thibadeau RN, MN Health Scientist Centers for Disease Control and Prevention Amanda Darnley Director of Communications and Marketing Spina Bifida Association <ul><li>SBA National Conference </li></ul><ul><li>June 28, 2011 </li></ul><ul><li>Anaheim, California </li></ul><ul><li>National Center on Birth Defects and Developmental Disabilities </li></ul><ul><li>Division of Human Development and Disability </li></ul>
    2. 2. Addressing Independence A Life Course Model for Spina Bifida <ul><li>This session </li></ul><ul><ul><li>Judy </li></ul></ul><ul><ul><ul><li>CDC’s life course model </li></ul></ul></ul><ul><ul><ul><li>CDC Spina Bifida web pages </li></ul></ul></ul><ul><ul><ul><li>Independence vignettes, CDC Spina Bifida web pages </li></ul></ul></ul><ul><ul><li>Amanda </li></ul></ul><ul><ul><ul><li>SBA “Preparations” interactive website </li></ul></ul></ul>
    3. 3. The Life Course Model <ul><li>Need for life course personal development strategies for children affected by spina bifida </li></ul><ul><li>Clinical experts, CDC, SBA identified developmental milestones and goals, focusing on independence and participation: Life Course Model </li></ul><ul><li>CDC updated Spina Bifida web pages to include Living with Spina Bifida information with focus on life course and the development of independence, the Life Course Message </li></ul><ul><li>SBA developed interactive website, “ Preparations ” using the Life Course Model </li></ul>
    4. 4. THE LIFE COURSE MESSAGE A MODEL FOR GROWING UP
    5. 5. The Life Course Message A Model for Growing Up <ul><li>Content </li></ul><ul><ul><ul><li>Health Self Management </li></ul></ul></ul><ul><ul><ul><li>Personal and Social Relationships </li></ul></ul></ul><ul><ul><ul><li>Education, Learning, Employment </li></ul></ul></ul>
    6. 6. The Life Course Message A Model for Growing Up Health Self Management <ul><li>Developmental Goal and Indicators of Achievement </li></ul><ul><ul><li>Moves to explore the home/daycare environment  </li></ul></ul><ul><ul><ul><li>Plays independently </li></ul></ul></ul><ul><ul><ul><li>Plays with others </li></ul></ul></ul><ul><ul><ul><li>Involvement in mobility development programs and therapies </li></ul></ul></ul><ul><ul><li>Tips for Achievement </li></ul></ul><ul><ul><ul><li>Encourage cruising, pulling to stand, standing and walking as appropriate </li></ul></ul></ul><ul><ul><li>Resources and Information </li></ul></ul><ul><ul><ul><li>Papers/websites </li></ul></ul></ul>
    7. 7. The Life Course Message A Model for Growing Up Personal and Social Relationships <ul><li>Developmental Goal and Indicators of Achievement </li></ul><ul><ul><li>Early sharing of responsibilities between child and parent </li></ul></ul><ul><ul><ul><li>The child has been assigned age-appropriate household chores. </li></ul></ul></ul><ul><ul><ul><li>The child receives rewards/consequences for completing the chores he/she has been assigned. </li></ul></ul></ul><ul><ul><li>Tips for Achievement </li></ul></ul><ul><ul><ul><li>Set goals with your child - expanding independence in household tasks. </li></ul></ul></ul><ul><ul><ul><li>Provide small rewards (e.g., verbal praise, stickers) each time the chore is completed. </li></ul></ul></ul><ul><ul><ul><li>Chores can involve complete tasks (e.g., emptying the whole dishwasher) or portions of tasks (e.g., putting clean forks and spoons away), depending upon the abilities of the child. </li></ul></ul></ul>
    8. 8. The Life Course Message A Model for Growing Up Education, Learning, Employment <ul><li>Developmental Goal and Indicators of Achievement </li></ul><ul><ul><li>Child is experiencing school success with individualized programming as needed </li></ul></ul><ul><ul><ul><li>Child is performing well academically in reading, math, and other subjects. </li></ul></ul></ul><ul><ul><ul><li>Child participates in class discussions, raises hand, and when appropriate, interacts without prompting. </li></ul></ul></ul><ul><ul><li>Tips for Achievement </li></ul></ul><ul><ul><ul><li>Use digital clocks when using a face dial is not successful. </li></ul></ul></ul><ul><ul><ul><li>Set a specific time for homework and allow for frequent, structured breaks. </li></ul></ul></ul><ul><ul><ul><li>Provide organizational tools. </li></ul></ul></ul>
    9. 9. SPINA BIFIDA WEB PAGES CENTERS FOR DISEASE CONTROL AND PREVENTION HTTP://WWW.CDC.GOV/NCBDDD/SPINABIFIDA
    10. 10. Spina Bifida Web Pages Content <ul><li>Facts </li></ul><ul><li>Health Issues and Treatments </li></ul><ul><li>Living with Spina Bifida and The Spina Bifida Experience </li></ul><ul><li>Research </li></ul><ul><li>References and Information </li></ul>
    11. 11. Spina Bifida Web Pages Content <ul><li>Living with Spina Bifida and The Spina Bifida Experience </li></ul><ul><ul><li>Newborn and Infant </li></ul></ul><ul><ul><li>Toddler and Preschool </li></ul></ul><ul><ul><li>School Age </li></ul></ul><ul><ul><li>Adolescent and Teen </li></ul></ul><ul><ul><li>Young Adult </li></ul></ul>
    12. 12. Spina Bifida Web Pages Short videos <ul><li>Independence emphasized </li></ul><ul><ul><li>“ Managing Medical Care” </li></ul></ul><ul><ul><ul><li>Keeping a notebook </li></ul></ul></ul><ul><ul><ul><li>Planning what questions to ask </li></ul></ul></ul><ul><ul><ul><li>Understanding spina bifida </li></ul></ul></ul><ul><ul><li>“ Developing Independence” </li></ul></ul><ul><ul><ul><li>From an early age </li></ul></ul></ul><ul><ul><ul><li>Same goals as those who don’t have spina bifida </li></ul></ul></ul><ul><ul><ul><li>Equalize the playing field with assistive devices </li></ul></ul></ul><ul><ul><li>“ Physical Activity” </li></ul></ul><ul><ul><ul><li>Important for all </li></ul></ul></ul><ul><ul><ul><li>From an early age </li></ul></ul></ul>
    13. 13. Spina Bifida Web Pages Short Videos <ul><ul><li>“ Managing Medical Care” </li></ul></ul><ul><ul><li>http://www.cdc.gov/NCBDDD/video/SpinaBifidaMedical/index.html </li></ul></ul><ul><ul><li>“Developing Independence” </li></ul></ul><ul><ul><li>http://www.cdc.gov/NCBDDD/video/SpinaBifidaIndependence/index.html </li></ul></ul><ul><ul><li>“Physical Activity” </li></ul></ul><ul><ul><li>http://www.cdc.gov/NCBDDD/video/SpinaBifidaPhysicalActivity/index.html </li></ul></ul>
    14. 14. Preparations Amanda Darnley Director of Communications and Marketing Spina Bifida Association <ul><li>National Center on Birth Defects and Developmental Disabilities </li></ul><ul><li>Division of Human Development and Disability </li></ul>
    15. 16. Preparations Web Site Goals <ul><li>Develop a website tool which parents of children with spina bifida and clinicians can use to gauge a child ‘s development and identify interventions to improve success in the development of adult independence. </li></ul><ul><li>Develop a young adult component. </li></ul>
    16. 17. Site Information <ul><li>CDC Transition Working Group </li></ul><ul><ul><li>Spina bifida experts from across the country </li></ul></ul><ul><li>Methodology </li></ul><ul><li>Life course model development </li></ul><ul><li>Testing of information </li></ul><ul><ul><li>Sessions during the 2009 and 2010 National Conferences </li></ul></ul>
    17. 18. Life Course Logic Model
    18. 19. Website Features <ul><li>Can be navigated by either age or topic (determined by the user) </li></ul><ul><li>User is able to save previous entries and access at a later date </li></ul><ul><li>Features success stories and other intervention ideas from users </li></ul><ul><li>Content does not vary by end user (clinicians and families receive the same information) </li></ul>
    19. 20. Feedback <ul><li>Site averages over 530 visitors per month </li></ul><ul><li>Almost 850 people have saved reports </li></ul><ul><li>On average, visitors complete one module per visit </li></ul><ul><li>Young adult modules are the most popular </li></ul>
    20. 21. Preparations Website Tour
    21. 22. Judy Thibadeau R.N. M.N. csn2@cdc.gov Division of Human Development and Disability National Center on Birth Defects and Developmental Disabilities Centers for Disease Control and Prevention Amanda Darnley [email_address] Spina Bifida Association <ul><li>National Center on Birth Defects and Developmental Disabilities </li></ul>

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