Presentation on theme: "EHDI Conference 3.3.05 1 RI EHDI: Mediating Factors on Maternal Stress & Empowerment Betty Vohr, MD Julie Jodoin, MEd, MA."— Presentation transcript:
EHDI Conference 3.3.05 1 RI EHDI: Mediating Factors on Maternal Stress & Empowerment Betty Vohr, MD Julie Jodoin, MEd, MA
EHDI Conference 3.3.052 Family Perspectives Study Principal Investigator Principal Investigator Betty Vohr Betty Vohr Co-Investigators Co-Investigators Mary Jane Johnson Mary Jane Johnson Deborah Topol Deborah Topol CDC Investigator CDC Investigator Pamela Costa Pamela Costa Study Coordinator Study Coordinator Julie Jodoin Data Analyst Data Analyst Richard Tucker Research Assistants Research Assistants Jyllian Anterni Cara Dalton Martha Leonard 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
EHDI Conference 3.3.053 Studys Purpose Study psychosocial characteristics of families with young children who have had their hearing screened as newborns
EHDI Conference 3.3.054 Goals & Study Questions 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 childs life?
EHDI Conference 3.3.055 Our prior study of the impact of a hearing screen program on mothers revealed that 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 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 42-50% of mothers experience stress (worry) at the time of the rescreen Rationale 1
EHDI Conference 3.3.056 Rationale 1 Unanswered questions: Unanswered questions: How long does worry persist? How long does worry persist? What are the mediators? What are the mediators? How does it impact on the child? How does it impact on the child?
EHDI Conference 3.3.057 Rationale 2 Families with children with HL have varying degrees of successful outcomes. Families with children with HL have varying degrees of successful outcomes. An unanswered question: An unanswered question: What are the mediators of outcome? What are the mediators of outcome?
EHDI Conference 3.3.058 Hypotheses 1. 1.Parents of infants with HL will report the greatest levels of stress. 2. 2.Parents of infants who do not pass the initial screen but pass the re-screen will report decreasing stress over the 3 assessments. 3. 3.Parents of infants who pass the initial screen will have the lowest levels of stress.
EHDI Conference 3.3.059 Hypotheses (cont.): 4.Parents with better support systems will exhibit less stress over time. 5.Parents with lower stress levels will have more optimal perceptions of their childs language.
EHDI Conference 3.3.0510 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
EHDI Conference 3.3.0511 Study Design Study GroupsMediatorsCaregiver Outcomes Family support & resources Communicative Effectiveness EI experiences Impact of HL Impact of FP Level of stress Level of Empowerment Positive Adaptations Increased Comm. Effectiveness HL Fail screen/ pass rescreen Pass screen Mediator/Outcomes Perception of child behavior child language
EHDI Conference 3.3.0512 Methods 1. Enroll families of infants with HL 2. Identify CNTL & FP matches 3. Recruit CNTL & FP matches thru the mail 4. Obtain informed consent 5. Conduct 3 home visits 6. Invite caregivers of children with HL to join focus groups
EHDI Conference 3.3.0513 Matching Criteria Gender Gender NICU vs well baby nursery NICU vs well baby nursery Date of birth (+/- 30 to 90 days) Date of birth (+/- 30 to 90 days) Hospital of birth (exact to dichotomized) Hospital of birth (exact to dichotomized) Maternal Education Maternal Education Race/Ethnicity Race/Ethnicity Health Insurance Health Insurance
EHDI Conference 3.3.0514 Standardized Assessments at 6, 12 & 18 mos. 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)
EHDI Conference 3.3.0515 12 & 18m Assessments Communicative Development Inventory (MacArthur-Bates) Communicative Development Inventory (MacArthur-Bates) Words & Gestures Words & Gestures Words & Sentences Words & Sentences Child Behavior Checklist (Achenbach) Child Behavior Checklist (Achenbach)
EHDI Conference 3.3.0516 Play Sessions at 6, 12 & 18 mos. Videotape 10-minute natural play session Videotape 10-minute natural play session Sanitized, developmentally-appropriate toys available Sanitized, developmentally-appropriate toys available Naturalistic setting in the home preferred Naturalistic setting in the home preferred Coded using PCIS (Farran et al) Coded using PCIS (Farran et al) Parent/Caregiver Involvement Scale Parent/Caregiver Involvement Scale
EHDI Conference 3.3.0517 Data Analysis 3 way analysis HL vs. FP vs. CNTL ANOVA to analyze differences among means Ҳ 2 to analyze differences among proportions Correlation analysis to show associations
EHDI Conference 3.3.0518 Study Groups Families of: currentgoal Newborns with HL(27)(30) False-Positives(27)(30-60) Controls(38)(60) Total(92) (120-150)
EHDI Conference 3.3.0519 Assessments Completed (n) 6m 12m 18m 6m 12m 18m HL19 144 FP20 178 CNTL29 279 Total68 5821 19 subjects enrolled after 6-10m window19 subjects enrolled after 6-10m window 3 subjects non-compliant at 6m3 subjects non-compliant at 6m 6 subjects non-compliant at 12m6 subjects non-compliant at 12m
EHDI Conference 3.3.0520 Group Characteristics Group Characteristics HL (n=21) FP (n=27) CNTL (n=37) Total (n=85) Male62%63%65%64% NICU48%33%46%42% LBW10%4%22%13% VLBW48%30%11%26%
EHDI Conference 3.3.0521 Group Environmental Characteristics HL (n=21) FP (n=27) CNTL (n=37) Total (n=85) high school 24%15%14%16% Medicaid or no Insurance 10%4%8%7% Non-White14%15%8%12% Non-Native English 10%7%3%6% SES37±1342±1341±14 41±13
EHDI Conference 3.3.0522 HL Group - Hearing Loss Type 8 unilateral HL 8 unilateral HL 4 permanent conductive 4 permanent conductive 4 sensorineural 4 sensorineural Ranges from mild to profound Ranges from mild to profound 13 bilateral HL 13 bilateral HL 10 sensorineural 10 sensorineural 3 auditory neuropathy 3 auditory neuropathy Ranges from mild to profound Ranges from mild to profound
EHDI Conference 3.3.0523 HL Group – Language at Home Native Language Native Language 90% English (n=19) 90% English (n=19) 10% Spanish (n=2) 10% Spanish (n=2) Second Language Second Language 5% English (n=1) 5% English (n=1) 5% Spanish (n=1) 5% Spanish (n=1) 10% Other (n=2) 10% Other (n=2) French, Polish French, Polish Learning some signs Learning some signs 52% (n=11) 52% (n=11)
EHDI Conference 3.3.0524 Percent Early Intervention Participation by Group n=21n=27 n=37 33%100% 14%
EHDI Conference 3.3.0525 Parenting Stress Index Short form – 36 questions Short form – 36 questions Likert Scale 1 to 5 Likert Scale 1 to 5 Strongly Agree to Strongly Disagree Strongly Agree to Strongly Disagree 1 Total Score* 1 Total Score* 3 Factor Scores 3 Factor Scores Parental Distress** (range 12-60) Parental Distress** (range 12-60) Parent-Child Dysfunctional Interaction** (range 12-60) Parent-Child Dysfunctional Interaction** (range 12-60) Difficult Child** (range 12-60) Difficult Child** (range 12-60) 1 Biased Response Set Score 1 Biased Response Set Score Defensive Responding** (range 7-35) Defensive Responding** (range 7-35)
EHDI Conference 3.3.0526 Family Support Scale 18 questions 18 questions Likert Scale from 1 to 5 Likert Scale from 1 to 5 Not at All Helpful to Extremely Helpful Not at All Helpful to Extremely Helpful Total Support Score* Total Support Score* 6 Subscales 6 Subscales Immediate Family Immediate Family Formal Kinship Formal Kinship Informal Kinship Informal Kinship Social Organization Social Organization Special Professional Services Special Professional Services General Professional Services General Professional Services
EHDI Conference 3.3.0527 Impact on the Family Adapted Version – G Adapted Version – G 34 questions in two parts 34 questions in two parts Likert Scale 1 to 4 Likert Scale 1 to 4 Strongly Agree to Strongly Disagree Strongly Agree to Strongly Disagree Total Impact* Total Impact* 5 Subscales 5 Subscales Financial Impact* Financial Impact* Familial Burden** Familial Burden** Caretaker Burden* Caretaker Burden* Disruption of Planning** Disruption of Planning** Coping Score Coping Score
EHDI Conference 3.3.0528 Family Empowerment Scale 34 questions 34 questions Likert Scale 1 to 5 Likert Scale 1 to 5 Not True at All thru Very True Not True at All thru Very True 3 Construct Areas 3 Construct Areas Family*, Ranges 12 to 60 Family*, Ranges 12 to 60 Service System*, Ranges 12 to 60 Service System*, Ranges 12 to 60 Community/Political*, Ranges 10 to 50 Community/Political*, Ranges 10 to 50
EHDI Conference 3.3.0529 Communicative Development Inventory Words and Gestures at 12 mos. Words and Gestures at 12 mos. Part I – Early Words Part I – Early Words 33 questions & 396 word checklist 33 questions & 396 word checklist Rate understands vs understands & says Rate understands vs understands & says Part II - Actions & Gestures Part II - Actions & Gestures 63 gesture checklist 63 gesture checklist Rate yes vs no Rate yes vs no
EHDI Conference 3.3.0530 CDI Scales Early Words Early Words First Signs of Understanding First Signs of Understanding Phrases Understood* Phrases Understood* Starting to Talk Starting to Talk Vocabulary Checklist* Vocabulary Checklist* Actions & Gestures Actions & Gestures Early Gestures* Early Gestures* Later Gestures* Later Gestures* Total Gestures* Total Gestures*
EHDI Conference 3.3.0532 Total Stress Scores at 6 & 12 m p=0.9575p=0.1952
EHDI Conference 3.3.0533 Percent with High Stress at 6 & 12m (>85 th percentile)
EHDI Conference 3.3.0534 Total Support Scores at 6 & 12 m p=0.7407p=0.0131 + + vs FP
EHDI Conference 3.3.0535 Total Impact on the Family at 6 & 12 mos. p=0.3753p=0.0156 *+ * vs Control + vs FP
EHDI Conference 3.3.0536 Impact on Family Subscales at 12m p=0.0120p=0.0143p=0.0051 *+ *vs Control + vs FP *+
EHDI Conference 3.3.0537 Family Empowerment Scales at 6m & 12m mean±SD mean±SD 6 mos. HL (n=19) 12 mos. HL (n=14) Family54.2±453.8±4 Service System 52.8±652.6±5 Community/Political28.5±729.6±10
EHDI Conference 3.3.0538 Community and Political Empowerment at 6 & 12 m for Parents of Infants with HL p=0.0182p=0.1060 32 25 35 25
EHDI Conference 3.3.0539 Correlation of Stress Scores with Total Family Support at 6 & 12 m 6m12m Stress Scores rprp Total Stress -0.470.0001-0.240.0663 Parental Distress -0.360.0023-0.190.1434 Parent-Child Dysf Inter -0.370.0018-0.120.3634 Difficult Child -0.390.0011-0.230.0875
EHDI Conference 3.3.0540 Correlation of Stress Factor Scores with Total Impact on the Family 6m12m Stress Scores rprp Parental Distress 0.520.00010.640.0001 Parent-Child Dysf Inter 0.540.00010.450.0005 Difficult Child 0.410.00060.420.0012 Defensive Responding 0.500.00010.550.0001
EHDI Conference 3.3.0542 CDI Scores at 12 months p=0.0163p=0.0231p=0.3863 ** * * *vs Control
EHDI Conference 3.3.0543 Conclusions for Mothers 1. 1.All 3 groups report similar stress @ 6m FP & C report stress between 6 & 12 m whereas stress of mothers with HL remains constant. 2. 2.All 3 groups report similar impact on the family and support at 6 months. 3. 3.Mothers of infants with HL, however, reported sig IOF and lower support than the other groups at 12 months.
EHDI Conference 3.3.0544 Conclusions for Mothers 5.Both stress levels and lower total support are each associated with IOF at 12 m. 6.Mothers of infants with HL perceive higher empowerment at 6 and 12m for family and service provision than for community & political areas. 7.However, mothers of NICU infants with HL perceive higher empowerment for community & political areas than mothers of WB nursery infants with HL.
EHDI Conference 3.3.0545 Conclusions for Infants at 12 m 1.42% of infants in the study are NICU grads. 2.100% of infants with HL are receiving EI compared to 31% of FP and 14% of controls. 3.All infant study groups have similar words understood, words produced, and early gestures. 4.Infants with HL or FP findings have fewer later gestures and total gestures than control infants.
EHDI Conference 3.3.0546 Conclusions for Study 1.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. 2.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.
EHDI Conference 3.3.0548 Matching Success by Group 25 HL subjects to be matched 25 HL subjects to be matched CNTL:HL target 2:1 CNTL:HL target 2:1 FP:HL target at least 1:1 FP:HL target at least 1:1 12 matched at 2:1 ratio (CNTL:HL) 12 matched at 2:1 ratio (CNTL:HL) 48% 48% 17 matched at least 1:1 ratio (CNTL:HL) 17 matched at least 1:1 ratio (CNTL:HL) 68% 68%
EHDI Conference 3.3.0549 Correlation of Stress Scores with Financial Impact on the Family 6m12m Stress Scores rprp Total Stress 0.440.00020.540.0001 Parental Distress 0.300.01350.460.0002 Parent-Child Dysf Inter 0.440.00020.340.0085 Difficult Child 0.350.00370.420.0010
EHDI Conference 3.3.0550 Correlation of Impact on the Family Sub-Scales with Total Stress 6m12m IOF scores rprp Disruption of Planning 0.540.00010.590.0001 Caretaker Burden 0.650.00010.430.0007 Familial Burden 0.360.00280.610.0001 Total Impact 0.620.00010.670.0001