1. EHDI Conference March 3, 2005 Linking Practice to Research Rhode Islands EHDI Project to Improve Services to Families Mary Jane Johnson, M.Ed. Deborah Topol, B.A.

2. How Things Have Changed Enrollment Many more families Diversity All types of hearing loss Expanded Knowledge Base Newborns Technology Additional disabilities

3. Family Guidance Enrollment

4. Diversity in Audiological Status

5. Family Support Positive Experiences Sensitivity/Communicative Effectiveness Impact on Family Sense of Empowerment Perceived Support/ Positive Experiences Sensitivity/ Communicative Effectiveness Families of children with HL identified at birth Child Outcomes Communication Growth Study Groups Mediators Family Outcomes Our Research Design Family Perspectives

6. 1. Family Support Scale (Dunst et al) 2. Family Resource Scale (Dunst & Leet) 3. Impact on the Family (Stein & Reissman) 4. Parenting Stress Index (Abidin) 5. Impact of Childhood HL on Family (Meadow-Orlans) 6. Family Empowerment Scale (Koren et al) 7. Parent Child Interaction Scales ( Farran et al) 8.Communicative Development Inventory (MacArthur) Assessments at 6, 12 & 18 mos.

7. Our Research Design Hypothesis Primary caregivers who report higher levels of empowerment and support will have higher ratings of communicative effectiveness with their child and more optimal language outcomes.

8. 2 Case Studies at 6, 12 and 18mos. Preliminary Trends in: Sense of Empowerment Perceived Support/Positive Experiences Sensitivity/Communicative Effectiveness Impact on Family Rate of Child Communication Growth

9. Case Studies Optimal Outcomes between 6 and 18 mos. Rising Sense of Empowerment More Perceived Support/Positive Experiences More Sensitivity and Communicative Effectiveness Decrease of Impact on Family Steady Rate of Communication Growth

10. What we are finding from 6 to 18 mos. Family Case Study #1 Declining Sense of Empowerment Same Perceived Support/Positive Experiences Increased Stress

11. What we are finding from 6 to 18 mos. Family Case Study #1 (cont.) Increase of Impact on Family Increase in Sensitivity Increase in Verbal involvement responsiveness Decrease in Control and Intrusiveness Slow Rate of Communication Growth

12. What we are finding from 6 to 18 mos. Family Case Study #2 Declining Sense of Empowerment Same Perceived Support/Positive Experiences Increased Stress Increase of Impact on Family

13. What we are finding from 6 to 18 mos. Case Study #2 (cont.) Increase in Sensitivity Increase in Verbal involvement responsiveness Decrease in Control and Intrusiveness Accelerated Rate of Communication Growth

14. Linking Research to Practice Case studies, like home visits do not always follow expected directions. Our team originally set out on a quest for a neat formula that would predict child [and family] needs. Instead members gained a healthy respect for the dynamic nature of development. Mary Pat Moeller

15. Well-timed, continuous Supportive Services Positive Experiences and Positive Outlook Sensitivity that changes with childs communicative needs Sense of Empowerment Communicative Connection with Child Positive Adaptations Diverse families of children with diverse degrees of HL and additional needs identified at birth Child Outcomes Communication Growth Study Groups Mediators Family Outcomes Refining Our Model

16. Linking Research to Practice There are no simple models that describe individual families Certain mediators may be more important at different critical periods in early development and family adaptation to a child with HL We need to develop more sensitive tools if we are to identify these critical periods for families Supports and interventions need to be more targeted and intense during these times Research cannot end at age 3