Resources: A Strong Predictor of Impact for Families of Infants with HL

1. Resources: A Strong Predictor of Impact for Families of Infants with HL Betty Vohr, MD Julie Jodoin-Krauzyk, MEd, MA Richard Tucker, BA Women & Infants’ Hospital Providence, RI Funded by a cooperative agreement between the Rhode Island Department of Health and the Early Hearing Detection and Intervention Program at the Centers for Disease Control & Prevention. Grant # UR3/CCU120033-01

2. Faculty Disclosure InformationIn the past 12 months, we have not had a significant financial interest or other relationship with the manufacturer of the product or provider of the services that will be discussed in our presentation.This presentation will not include discussion of pharmaceuticals or devices that have not been approved by the FDA.

3. Family Perspectives Study Initial Objectives: • Study psychosocial characteristics over time of families with young children who have had their hearing screened as newborns • Mediators include resources and support • Outcomes consist of parenting stress & impact on the family

4. Original Study Groups Families of: Proposed n • Newborns with permanent HL 30 • Newborns who did not pass the initial screen but returned and passed the rescreen 30-60 • Newborns who passed the screen 60 Eligible DOB 10.15.02 - 4.30.05

5. Study Groups Mediators Caregiver Outcomes Original Study Design • Resources & support • Commun. Effectiveness • EI experiences • Impact of HL • Impact of FP • HL • Fail screen/ pass rescreen • Pass screen • Level of stress • Level of Empowerment • Positive Adaptations • Increased Commun. Effectiveness • Perception of child behavior and child language Mediator/Child Outcomes

6. Study Groups Mediators Caregiver Outcomes Study Design • Resources & support • Commun. Effectiveness • EI experiences • Impact of HL • Impact of FP • HL • Fail screen/ pass rescreen • Pass screen • Level of stress • Level of Empowerment • Positive Adaptations • Increased Commun. Effectiveness • Perception of child behavior/language • Level of impact on family Mediator/Child Outcomes Intermediary Outcome

7. Methods: • Enroll families of infants with HL* • Identify CNTL & FP matches • Recruit CNTL & FP matches thru mail • Obtain informed consent • Conduct 3 home visits at 6,12, & 18m ( ± 4m) * No exclusions

8. Matching Criteria • Gender • NICU vs Well-Baby Nursery • Date of Birth (+/- 30 to 90 days) • Hospital of Birth • Maternal Education • Race/Ethnicity • Health Insurance

9. Standardized Assessments at 6, 12 & 18m: • Family Resource Scale (Dunst & Leet) • Family Support Scale (Dunst et al) • Parenting Stress Index (Abidin) • Impact on the Family (Stein & Reissman) • Impact of Childhood HL on Family(Meadow-Orlans)

10. Initial Data Analysis • 3 way analysis HL vs. FP vs. CNTL • ANOVA to analyze differences among group means • Ҳ2 to analyze differences among proportions

11. Recruitment by Study Group: Families of: n • Newborns with HL 33 • False-Positives 37 • Controls 62 • Total 132

12. Assessments Completed thru 12.31.05(n) 6m12m18m HL 29 23 19 FP 27 27 21 CNTL 45 47 32 Total: 101 97 72 Compliance: 98% 90% 84% 34 subjects enrolled after 6-10m window 2 subjects enrolled after 12-16m window

13. Initial Results

14. Initial Stress & Impact Scores

15. Findings: • At 6 & 12m, no differences were found in stress or impact between the FP and Control groups. • HL group was heterogeneous by degree of HL.

16. Therefore: A New Analytic Approach • Control & FP groups were collapsed into a single control group. • HL group was divided into 2 groups by degree of HL, to examine effects of severity.

17. New Analytic Groups: Groupn • Bilat. Mod-Prof HL 17* • Unilateral/Mild HL 15 • Control 99 *One family with Deaf child of Deaf parents excluded from stress & impact analysis

18. Hypotheses: • Mothers of infants with bilateral moderate-to-profound HL will report ↑ levels of stress & impact, as compared to mothers of infants with unilateral/mild HL and no HL at 6 & 12m. • Mothers with stronger resources & support systems will report ↓ stress & impact on the family over time.

19. Data Analysis: • Three-Way Analysis • Bilat. Mod-Prof vs. Unil/Mild vs. Controls • ANOVA to analyze differences among group means • Ҳ2 to analyze differences among proportions • Correlation Analysis to show associations • Regression Models to show relationships of predictors with outcomes while controlling for other factors.

20. Distribution of Visits: 6m12m Mod-Prof HL 16 9 Mild HL 12 13 Control 72 74 Total 100 96

21. Maternal Characteristics* *Mothers with multiples enrolled in study are counted once here

22. Child Characteristics

23. Types of Hearing Loss * ** **1 mild bilateral *2 mild bilateral

24. Percent Early Intervention Participation by Group p=0.001 100% 87% 29% n=17 n=13 n=29

25. HL Group – Entrance in EI Mean chronologic age at entrance into EI: Mean (m) Range Entire HL Group 3.8 ± 2 0.5 to 11.0* median=3.4 Bilat. Mod-prof 4.4 ± 2 1.8 to 11.0* median=4.3 Unil/Mild 3.0 ± 2 0.5 to 6.2 median=3.0 *6.5=next highest age

26. HL Group – “Early” EI • Entrance into EI: • ≤ 3m* n=16 (53.3%) • >3m* n=14 (46.7%) • Not participating in EI n=2 • Conductive unilateral HL, unknown degree • Mild unilateral SNHL *chronologic age

27. Results

28. Family Resource Scale* • 31 questions • Likert Scale 1 to 5 • Not at All Adequate thru Almost Always Adequate • Total Resources Score (31-155) *Dunst CJ, Leet HE. “Measuring the adequacy of resources in families with young children”. Child Care, Health and Development 1987;13:111-115.

29. Total Resources Scores at 6 & 12mPossible range 31-155 p=0.8470 p=0.7040 n=16 n=12 n=72 n=9 n=13 n=74

30. Family Support Scale* • 18 questions • Likert Scale from 1 to 5 : Not at all Helpful to Extremely Helpful • Total Support Score (18-90) • Subscales • General Professional Services (2-10) • Special Professional Services (3-15) *Dunst CH, Trivette CM, Jenkins V. Family Support Scale. Cambridge, MA: Bookline Books, Inc.; 1988.

31. Total Support Scores at 6 & 12 mPossible range 18-90 p=0.9656 p=0.4014 n=16 n=12 n=72 n=9 n=13 n=74

32. Support: General Professional Services Scores at 6 & 12m Possible range 2-10 p=0.0041 p=0.0040 * vs Control + vs Unil/Mild * + * + n=16 n=12 n=72 n=9 n=13 n=72

33. Support: Special Professional Services Scores at 6 & 12m Possible range 3-10 p=0.0596 p=0.0453 * vs Control + vs Unil/Mild * + + n=16 n=12 n=37 n=9 n=11 n=43

34. Parenting Stress Index* • Short form – 36 questions • Likert Scale 1 to 5: Strongly Agree to Strongly Disagree • Total Stress Score (36-180) • Factor Scores (12-60) • Parental Distress • Parent-Child Dysfunctional Interaction • Difficult Child *Abidin RR. Parenting Stress Index (PSI) Third Edition. Lutz, FL: Psychological Assessment Resources, Inc; 1995.

35. Total Stress Scores at 6 & 12 mPossible range 36-180 p=0.8338 p=0.9807

36. Impact on the Family* • Adapted Version – G • 34 questions in two parts • Likert Scale 1 to 4: Strongly Agree to Strongly Disagree • Total Impact on the Family Score (14-56) • Subscales • Financial Impact (2-8) • Familial Burden (4-16) • Caretaker Burden (3-12) • Disruption of Planning (5-20) *Stein REK, Reissman CK. “The development of an impact on family scale: Preliminary findings”. Medical Care 1980;18:465-72.

37. Total Impact on the Family Scores at 6 & 12 m Possible range 14-56 p=0.1642 p=0.5886 n=16 n=12 n=72 n=9 n=13 n=74

38. Financial Impact Scores 6 & 12 mPossible range 2-8 p=0.0283 p=0.1052 * + * vs Control + vs Unil/Mild n=16 n=12 n=72 n=9 n=13 n=74

39. A Closer Look at the 2 Groups of Children with HL

40. Impact of Childhood HL on the Family* • 24 questions • Likert Scale 1 to 4:Strongly Disagree to Strongly Agree • Total Positive Adaptation Score (24-96) • Subscales • Communication (8-32) • Stress (7-28) • Relationships-Professional & Educational (8-32) *Meadow-Orlans KP. “The impact of childhood hearing loss on the family”. In: Moores DF, Meadow-Orlans KP, editors. Educational & Developmental Aspects of Deafness. Washington, DC: Gallaudet University Press; 1990.

41. Positive Adaptation Scores at 6 & 12m Possible range 24-96Meadow-Orlans P=NS P=NS

42. Impact of HL on Family Scores at 6 & 12m

43. Selected Items form the Impact of Childhood HL on the Family • Communication • Stress • Relationships

44. “My communication skills are quite adequate for my child’s needs.” “I wish I could communicate as well with my child with HL as I do with other hearing children.” “My child with HL is often left out of family conversations because of communication problems.” Agree or Strongly Agree 6m12m 93% 91% 39% 29% 4% 0% Impact of HL on Family Communication Subscale Analysis- HL cohort only

45. “I often regret the extra time our family must devote to the challenges of HL.” “Much of the stress in my family is related to HL.” “Parents of children with HL are expected to do too many things for them. This is a burden for me.” Agree or Strongly Agree 6m12m 14% 0% 4% 13% 4% 0% Impact of HL on Family Stress Subscale Analysis - HL cohort only

46. “I feel satisfied with the educational progress of my child with HL.” “I’ve had a lot of good professional advice about education for my child with HL.” “Many times I have been angry because of the way professionals treated me as a parent of a child with HL.” Agree or Strongly Agree 6m12m 100% 96% 89% 81% 0% 0% Impact of HL on Family Relationships Subscale Analysis - HL cohort only

47. Exploring Relationships between Possible Mediators & Stress/Impact

48. Correlations: Illustrative Graphs Y 0 Y = Outcome - 0.2 - 0.3 - 0.5 - 0.6 X X = Mediator

49. Sig Associations of Total Resources with Stress Scores at 6 & 12m for Total Cohort *P<0.05 **P<0.01 ***P<0.001

50. Sig. Associations of Total Support with Stress at 6 & 12 m for Total Cohort *P<0.05 **P<0.01 ***P<0.001