Addressing Independence: A Discussion of the Methodology Informing CDC’s Spina Bifida Transition Communications – Judy Thibadeau, RN, MN & Amanda Darnley
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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 Addressing Independence: A Discussion of the Methodology Informing CDC’s Spina Bifida Transition Communications – Judy Thibadeau, RN, MN & Amanda Darnley Presentation Transcript

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