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RI EHDI: Mediating Factors on Maternal Stress & Empowerment

RI EHDI: Mediating Factors on Maternal Stress & Empowerment. Betty Vohr, MD Julie Jodoin, MEd, MA. Principal Investigator Betty Vohr Co-Investigators Mary Jane Johnson Deborah Topol CDC Investigator Pamela Costa. Study Coordinator Julie Jodoin Data Analyst Richard Tucker

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RI EHDI: Mediating Factors on Maternal Stress & Empowerment

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  1. RI EHDI:Mediating Factors on Maternal Stress & Empowerment Betty Vohr, MD Julie Jodoin, MEd, MA

  2. Principal Investigator Betty Vohr Co-Investigators Mary Jane Johnson Deborah Topol CDC Investigator Pamela Costa Study Coordinator Julie Jodoin Data Analyst Richard Tucker Research Assistants Jyllian Anterni Cara Dalton Martha Leonard Family Perspectives Study 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

  3. Study’s Purpose • Study psychosocial characteristics of families with young children who have had their hearing screened as newborns

  4. 1. Newborn Hearing Screening Process Does a false-positive screen have a lasting impact on parent stress and coping skills? 2. Early childhood Services What are we doing/can we do to empower parent in the first three years of a child’s life? Goals & Study Questions

  5. Rationale 1 • Our prior study of the impact of a hearing screen program on mothers revealed that • 10% of mothers experience stress (worry) at the time of the screen • 42-50% of mothers experience stress (worry) at the time of the rescreen

  6. Rationale 1 • Unanswered questions: • How long does worry persist? • What are the mediators? • How does it impact on the child?

  7. Rationale 2 • Families with children with HL have varying degrees of successful outcomes. • An unanswered question: • What are the mediators of outcome?

  8. Hypotheses • Parents of infants with HL will report the greatest levels of stress. • Parents of infants who do not pass the initial screen but pass the re-screen will report decreasing stress over the 3 assessments. • Parents of infants who pass the initial screen will have the lowest levels of stress.

  9. Hypotheses (cont.): • Parents with better support systems will exhibit less stress over time. • Parents with lower stress levels will have more optimal perceptions of their child’s language.

  10. Anticipated Study Groups Families of: (n) • Newborns with permanent HL (30) • Newborns who did not pass the in-house screen but returned and passed the rescreen (30-60) • Newborns who passed the screen (60) Eligible DOB 10.15.02 - 1.31.05

  11. Family support & resources Communicative 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 Comm. Effectiveness Study Design Study Groups Mediators Caregiver Outcomes Perception of child behavior child language Mediator/Outcomes

  12. Methods • Enroll families of infants with HL • Identify CNTL & FP matches • Recruit CNTL & FP matches thru the mail • Obtain informed consent • Conduct 3 home visits • Invite caregivers of children with HL to join focus groups

  13. Matching Criteria • Gender • NICU vs well baby nursery • Date of birth (+/- 30 to 90 days) • Hospital of birth (exact to dichotomized) • Maternal Education • Race/Ethnicity • Health Insurance

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

  15. 12 & 18m Assessments • Communicative Development Inventory(MacArthur-Bates) • Words & Gestures • Words & Sentences • Child Behavior Checklist(Achenbach)

  16. Play Sessions at 6, 12 & 18 mos. • Videotape 10-minute natural play session • Sanitized, developmentally-appropriate toys available • Naturalistic setting in the home preferred • Coded using PCIS (Farran et al) • Parent/Caregiver Involvement Scale

  17. Data Analysis • 3 way analysis HL vs. FP vs. CNTL • ANOVA to analyze differences among means • Ҳ2 to analyze differences among proportions • Correlation analysis to show associations

  18. Study Groups Families of: currentgoal • Newborns with HL (27) (30) • False-Positives (27) (30-60) • Controls (38) (60) • Total (92) (120-150)

  19. Assessments Completed (n) 6m12m18m HL 19 14 4 FP 20 17 8 CNTL 29 27 9 Total 68 58 21 • 19 subjects enrolled after 6-10m window • 3 subjects non-compliant at 6m • 6 subjects non-compliant at 12m

  20. Group Characteristics

  21. Group Environmental Characteristics

  22. HL Group - Hearing Loss Type • 8 unilateral HL • 4 permanent conductive • 4 sensorineural • Ranges from mild to profound • 13 bilateral HL • 10 sensorineural • 3 auditory neuropathy • Ranges from mild to profound

  23. HL Group – Language at Home • Native Language • 90% English (n=19) • 10% Spanish (n=2) • Second Language • 5% English (n=1) • 5% Spanish (n=1) • 10% Other (n=2) • French, Polish • Learning “some signs” • 52% (n=11)

  24. Percent Early Intervention Participation by Group 100% 33% 14% n=21 n=27 n=37

  25. Parenting Stress Index • Short form – 36 questions • Likert Scale 1 to 5 • Strongly Agree to Strongly Disagree • 1 Total Score* • 3 Factor Scores • Parental Distress** (range 12-60) • Parent-Child Dysfunctional Interaction** (range 12-60) • Difficult Child** (range 12-60) • 1 Biased Response Set Score • Defensive Responding** (range 7-35)

  26. Family Support Scale • 18 questions • Likert Scale from 1 to 5 • Not at All Helpful to Extremely Helpful • Total Support Score* • 6 Subscales • Immediate Family • Formal Kinship • Informal Kinship • Social Organization • Special Professional Services • General Professional Services

  27. Impact on the Family • Adapted Version – G • 34 questions in two parts • Likert Scale 1 to 4 • Strongly Agree to Strongly Disagree • Total Impact* • 5 Subscales • Financial Impact* • Familial Burden** • Caretaker Burden* • Disruption of Planning** • Coping Score

  28. Family Empowerment Scale • 34 questions • Likert Scale 1 to 5 • Not True at All thru Very True • 3 Construct Areas • Family*, Ranges 12 to 60 • Service System*, Ranges 12 to 60 • Community/Political*, Ranges 10 to 50

  29. Communicative Development Inventory • Words and Gestures at 12 mos. • Part I – Early Words • 33 questions & 396 word checklist • Rate understands vs understands & says • Part II - Actions & Gestures • 63 gesture checklist • Rate yes vs no

  30. CDI Scales • Early Words • First Signs of Understanding • Phrases Understood* • Starting to Talk • Vocabulary Checklist* • Actions & Gestures • Early Gestures* • Later Gestures* • Total Gestures*

  31. Results

  32. Total Stress Scores at 6 & 12 m p=0.9575 p=0.1952

  33. Percent with High Stress at 6 & 12m(>85th percentile)

  34. Total Support Scores at 6 & 12 m + vs FP p=0.7407 p=0.0131 +

  35. Total Impact on the Family at 6 & 12 mos. * vs Control + vs FP p=0.3753 p=0.0156 *+

  36. Impact on Family Subscales at 12m *vs Control + vs FP *+ *+ *+ p=0.0120 p=0.0143 p=0.0051

  37. Family Empowerment Scales at 6m & 12m

  38. Community and Political Empowerment at 6 & 12 m for Parents of Infants with HL p=0.0182 p=0.1060 35 32 25 25

  39. Correlation of Stress Scores with Total Family Support at 6 & 12 m

  40. Correlation of Stress Factor Scores with Total Impact on the Family

  41. CDI Scores at 12 months p=0.8791 p=0.2709 p=0.5472

  42. CDI Scores at 12 months *vs Control * * * * p=0.3863 p=0.0163 p=0.0231

  43. Conclusions for Mothers • All 3 groups report similar stress @ 6m FP & C report ¯stress between 6 & 12 m whereas stress of mothers with HL remains constant. • All 3 groups report similar impact on the family and support at 6 months. • Mothers of infants with HL, however, reported sig IOF and lower support than the other groups at 12 months.

  44. Conclusions for Mothers • Both  stress levels and lower total support are each associated with  IOF at 12 m. • Mothers of infants with HL perceive higher empowerment at 6 and 12m for family and service provision than for community & political areas. • However, mothers of NICU infants with HL perceive higher empowerment for community & political areas than mothers of WB nursery infants with HL.

  45. Conclusions for Infants at 12 m • 42% of infants in the study are NICU grads. • 100% of infants with HL are receiving EI compared to 31% of FP and 14% of controls. • All infant study groups have similar words understood, words produced, and early gestures. • Infants with HL or FP findings have fewer later gestures and total gestures than control infants.

  46. Conclusions for Study • These findings suggest that for families of infants with HL, impact on the family persists over time, and that mothers need the continued support of both their families and professionals to optimize family and child outcomes. • Infants with HL who are participating in EI have similar number of words understood and words produced at 12 m of age as compared to controls.

  47. Matching Success by Group • 25 HL subjects to be matched • CNTL:HL target 2:1 • FP:HL target at least 1:1 • 12 matched at 2:1 ratio (CNTL:HL) • 48% • 17 matched at least 1:1 ratio (CNTL:HL) • 68%

  48. Correlation of Stress Scores with Financial Impact on the Family

  49. Correlation of Impact on the Family Sub-Scales with Total Stress

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