EHDI Conference 3.3.05 1 RI EHDI: Mediating Factors on Maternal Stress & Empowerment Betty Vohr, MD...

EHDI Conference 3.3.05EHDI Conference 3.3.05 11

RI EHDI:RI EHDI:Mediating Factors on Mediating Factors on

Maternal Stress & Maternal Stress & EmpowermentEmpowerment

Betty Vohr, MDBetty Vohr, MD

Julie Jodoin, MEd, MA Julie Jodoin, MEd, MA


Family Perspectives StudyFamily Perspectives Study

Principal Principal InvestigatorInvestigator Betty VohrBetty Vohr

Co-InvestigatorsCo-Investigators Mary Jane Mary Jane

JohnsonJohnson Deborah TopolDeborah Topol

CDC InvestigatorCDC Investigator Pamela CostaPamela Costa

Study Study CoordinatorCoordinator Julie JodoinJulie Jodoin

Data AnalystData Analyst Richard TuckerRichard Tucker

Research Research AssistantsAssistants Jyllian AnterniJyllian Anterni Cara DaltonCara Dalton Martha LeonardMartha LeonardFunded 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


Study’s PurposeStudy’s Purpose

Study psychosocial characteristics of families with young children who have had their hearing screened as newborns


Goals & Study QuestionsGoals & 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 child’s life?


Our prior study of the impact of a Our prior study of the impact of a hearing screen program on mothers hearing screen program on mothers revealed thatrevealed that 10% of mothers experience stress 10% of mothers experience stress (worry) at the time of the screen(worry) at the time of the screen 42-50% of mothers experience 42-50% of mothers experience stress (worry) at the time of the stress (worry) at the time of the rescreenrescreen

Rationale 1Rationale 1



Unanswered questions: Unanswered questions: How long does worry How long does worry persist? persist?

What are the mediators? What are the mediators? How does it impact on the How does it impact on the child?child?



Families with children with Families with children with HL have varying degrees of HL have varying degrees of successful outcomes.successful outcomes.

An unanswered question:An unanswered question:

What are the mediators of What are the mediators of outcome?outcome?


HypothesesHypotheses1. Parents of infants with HL will report

the greatest levels of stress.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. Parents of infants who pass the initial screen will have the lowest levels of stress.


Hypotheses (cont.):Hypotheses (cont.):

4.4. Parents with better support systems Parents with better support systems will exhibit less stress over time.will exhibit less stress over time.

5.5. Parents with lower stress levels will Parents with lower stress levels will have more optimal perceptions of have more optimal perceptions of their child’s language.their child’s language.


Anticipated Study GroupsAnticipated Study GroupsFamilies 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


Study DesignStudy Design

Study GroupsStudy Groups MediatorsMediators Caregiver Caregiver OutcomesOutcomes •Family support &

resources

•Communicative Effectiveness

•EI experiences

•Impact of HL

•Impact of FP

•Level of stress

•Level ofEmpowerment

•Positive Adaptations

•Increased Comm. Effectiveness

• HL

• Fail screen/ pass rescreen

• Pass screen

Mediator/OutcomesMediator/Outcomes

• Perception of child behavior child language


MethodsMethods

1.1. Enroll families of infants with HLEnroll families of infants with HL

2.2. Identify CNTL & FP matchesIdentify CNTL & FP matches

3.3. Recruit CNTL & FP matches thru the Recruit CNTL & FP matches thru the mailmail

4.4. Obtain informed consent Obtain informed consent

5.5. Conduct 3 home visitsConduct 3 home visits

6.6. Invite caregivers of children with HL to Invite caregivers of children with HL to join focus groupsjoin focus groups


Matching CriteriaMatching Criteria GenderGender NICU vs well baby nurseryNICU vs well baby nursery Date of birth (+/- 30 to 90 days)Date of birth (+/- 30 to 90 days) Hospital of birth (exact to Hospital of birth (exact to

dichotomized)dichotomized) Maternal EducationMaternal Education Race/EthnicityRace/Ethnicity Health InsuranceHealth Insurance


Standardized Assessments Standardized Assessments at 6, 12 & 18 mos.at 6, 12 & 18 mos.

1.1. Family Support Scale Family Support Scale (Dunst et al)(Dunst et al)

2.2. Family Resource Scale Family Resource Scale (Dunst & Leet)(Dunst & Leet)

3.3. Impact on the Family Impact on the Family (Stein & Reissman)(Stein & Reissman)

4.4. Parenting Stress Index Parenting Stress Index (Abidin)(Abidin)

5.5. Impact of Childhood HL on FamilyImpact of Childhood HL on Family (Meadow-Orlans)(Meadow-Orlans)

6.6. Family Empowerment ScaleFamily Empowerment Scale (Koren et al)(Koren et al)


12 & 18m Assessments12 & 18m Assessments

Communicative Development Communicative Development InventoryInventory (MacArthur-Bates)(MacArthur-Bates)

Words & GesturesWords & Gestures Words & SentencesWords & Sentences

Child Behavior ChecklistChild Behavior Checklist (Achenbach)(Achenbach)


Play Sessions Play Sessions at 6, 12 & 18 mos.at 6, 12 & 18 mos.

Videotape 10-minute natural play Videotape 10-minute natural play sessionsession

Sanitized, developmentally-appropriate Sanitized, developmentally-appropriate toys availabletoys available

Naturalistic setting in the home preferredNaturalistic setting in the home preferred Coded using Coded using PCISPCIS (Farran et al) (Farran et al)

Parent/Caregiver Involvement ScaleParent/Caregiver Involvement Scale


Data AnalysisData 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


Study GroupsStudy Groups

Families of: current goal Newborns with HL (27) (30) False-Positives (27) (30-60) Controls (38) (60)

Total (92) (120-150)


Assessments Completed (n)Assessments Completed (n) 6m6m 12m12m 18m18m

HLHL 1919 14 14 44

FPFP 2020 17 17 88

CNTLCNTL 2929 27 27 99

TotalTotal 6868 58 58 2121• 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


Group CharacteristicsGroup Characteristics

HL HL (n=21)(n=21)

FP FP (n=27)(n=27)

CNTL CNTL (n=37)(n=37)

Total Total (n=85)(n=85)

MaleMale 62%62% 63%63% 65%65% 64%64%

NICUNICU 48%48% 33%33% 46%46% 42%42%

LBWLBW 10%10% 4%4% 22%22% 13%13%

VLBWVLBW 48%48% 30%30% 11%11% 26%26%


Group Environmental Group Environmental CharacteristicsCharacteristics

HL HL (n=21)(n=21)

FP FP (n=27)(n=27)

CNTL CNTL (n=37)(n=37)

Total Total (n=85)(n=85)

≤≤high high schoolschool

24%24% 15%15% 14%14% 16%16%

Medicaid or Medicaid or no Insuranceno Insurance

10%10% 4%4% 8%8% 7%7%

Non-WhiteNon-White 14%14% 15%15% 8%8% 12%12%

Non-Native Non-Native English English

10%10% 7%7% 3%3% 6%6%

SESSES 37±1337±13 42±1342±13 41±1441±14 4141±13±13


HL Group - Hearing Loss HL Group - Hearing Loss Type Type

8 unilateral HL8 unilateral HL 4 permanent conductive4 permanent conductive 4 sensorineural4 sensorineural Ranges from mild to profoundRanges from mild to profound

13 bilateral HL13 bilateral HL 10 sensorineural10 sensorineural 3 auditory neuropathy3 auditory neuropathy Ranges from mild to profoundRanges from mild to profound


HL Group – Language at HL Group – Language at HomeHome

Native LanguageNative Language 90% English (n=19)90% English (n=19) 10% Spanish (n=2)10% Spanish (n=2)

Second LanguageSecond 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, PolishFrench, Polish Learning “some signs”Learning “some signs”

52% (n=11)52% (n=11)


Percent Early Intervention Percent Early Intervention Participation by GroupParticipation by Group

0

10

20

30

40

50

60

70

80

90

100

HL FP CNTL

Perc

ent

n=21 n=27 n=37

33%100% 14%


Parenting Stress IndexParenting Stress Index Short form – 36 questionsShort form – 36 questions Likert Scale 1 to 5Likert Scale 1 to 5

Strongly Agree to Strongly DisagreeStrongly Agree to Strongly Disagree 1 Total Score*1 Total Score* 3 Factor Scores3 Factor Scores

Parental Distress** Parental Distress** (range 12-60)(range 12-60) Parent-Child Dysfunctional Interaction** Parent-Child Dysfunctional Interaction** (range (range

12-60)12-60) Difficult Child** Difficult Child** (range 12-60)(range 12-60)

1 Biased Response Set Score 1 Biased Response Set Score Defensive Responding** (range 7-35)Defensive Responding** (range 7-35)


Family Support ScaleFamily Support Scale 18 questions18 questions Likert Scale from 1 to 5Likert Scale from 1 to 5

Not at All HelpfulNot at All Helpful to to Extremely HelpfulExtremely Helpful Total Support Score*Total Support Score* 6 Subscales6 Subscales

Immediate FamilyImmediate Family Formal Kinship Formal Kinship Informal KinshipInformal Kinship Social OrganizationSocial Organization Special Professional ServicesSpecial Professional Services General Professional ServicesGeneral Professional Services


Impact on the FamilyImpact on the Family Adapted Version – GAdapted Version – G 34 questions in two parts34 questions in two parts Likert Scale 1 to 4Likert Scale 1 to 4

Strongly AgreeStrongly Agree to to Strongly DisagreeStrongly Disagree Total Impact*Total Impact* 5 Subscales5 Subscales

Financial Impact*Financial Impact* Familial Burden**Familial Burden** Caretaker Burden*Caretaker Burden* Disruption of Planning**Disruption of Planning** Coping ScoreCoping Score


Family Empowerment Family Empowerment ScaleScale

34 questions34 questions Likert Scale 1 to 5 Likert Scale 1 to 5

Not True at AllNot True at All thru thru Very TrueVery True 3 Construct Areas3 Construct Areas

Family*, Family*, Ranges 12 to 60Ranges 12 to 60 Service System*, Service System*, Ranges 12 to 60Ranges 12 to 60 Community/Political*, Community/Political*, Ranges 10 to 50Ranges 10 to 50


Communicative Development Communicative Development InventoryInventory

Words and GesturesWords and Gestures at 12 mos. at 12 mos. Part I – Early WordsPart I – Early Words

33 questions & 396 word checklist33 questions & 396 word checklist Rate Rate understandsunderstands vs vs understands & understands &

sayssays Part II - Actions & GesturesPart II - Actions & Gestures

63 gesture checklist63 gesture checklist Rate Rate yesyes vs vs nono


CDI ScalesCDI Scales Early WordsEarly Words

First Signs of UnderstandingFirst Signs of Understanding Phrases Understood*Phrases Understood* Starting to TalkStarting to Talk Vocabulary Checklist*Vocabulary Checklist*

Actions & GesturesActions & Gestures Early Gestures*Early Gestures* Later Gestures*Later Gestures* Total Gestures*Total Gestures*


ResultsResults


Total Stress Scores at 6 & Total Stress Scores at 6 & 12 m12 m

67.5 67.5

66.3

64.1

66

63.9

62

63

64

65

66

67

68

6m 12m

HLFPCNTL

p=0.9575

p=0.1952


Percent with High Stress at 6 & Percent with High Stress at 6 & 12m12m

(>85(>85th th percentile) percentile)21

1517

7

12

4

0

5

10

15

20

25

HL FP CNTL

% 6 mos.% 12 mos.


Total Support Scores at 6 & 12 Total Support Scores at 6 & 12 mm

22.4

19.2

23.825.6

24 23

0

5

10

15

20

25

30

6m 12m

HLFPCNTL

p=0.7407 p=0.0131

+

+ vs FP


Total Impact on the Family Total Impact on the Family at 6 & 12 mos.at 6 & 12 mos.

26.8 26.8

25.1

23.7

25.8

23.6

22

23

24

25

26

27

28

6 months 12 months

HLFPCNTL

p=0.3753 p=0.0156*+

* vs Control

+ vs FP


Impact on Family Subscales at Impact on Family Subscales at 12m12m

4.3

7.8

6.0

3.6

6.5

4.9

3.4

6.4

5.1

0

1

2

3

4

5

6

7

8

9

Financial Familial Burden Caretaker Burden

HLFPCNTL

p=0.0120

p=0.0143

p=0.0051

*+

*+ *vs Control

+ vs FP

*+


Family Empowerment Scales Family Empowerment Scales at 6m & 12mat 6m & 12m

mean±SDmean±SD

6 mos. 6 mos. HLHL

(n=19)(n=19)

12 mos. 12 mos. HLHL

(n=14)(n=14)

FamilyFamily 54.2±454.2±4 53.8±453.8±4

Service SystemService System 52.8±652.8±6 52.6±552.6±5

Community/Community/PoliticalPolitical

28.5±728.5±7 29.6±1029.6±10


Community and Political Community and Political Empowerment at 6 & 12 m for Empowerment at 6 & 12 m for

Parents of Infants with HLParents of Infants with HL

0

5

10

15

20

25

30

35

40

6 months 12 months

NICUWell Baby Nurseryp=0.0182 p=0.1060

3232

2525

3535

2525


Correlation of Stress Scores Correlation of Stress Scores with with

Total Family Support at 6 & 12 Total Family Support at 6 & 12 mm6m6m 12m12m

Stress ScoresStress Scores rr pp rr pp

Total StressTotal Stress -0.47-0.47 0.00010.0001 -0.24-0.24 0.06630.0663

Parental Parental DistressDistress

-0.36-0.36 0.00230.0023 -0.19-0.19 0.14340.1434

Parent-Child Parent-Child Dysf InterDysf Inter

-0.37-0.37 0.00180.0018 -0.12-0.12 0.36340.3634

Difficult ChildDifficult Child -0.39-0.39 0.00110.0011 -0.23-0.23 0.08750.0875


Correlation of Stress Factor Correlation of Stress Factor Scores with Total Impact on Scores with Total Impact on

the Family the Family 6m6m 12m12m



0.520.52 0.00010.0001 0.640.64 0.00010.0001


0.540.54 0.00010.0001 0.450.45 0.00050.0005

Difficult ChildDifficult Child 0.410.41 0.00060.0006 0.420.42 0.00120.0012

Defensive Defensive RespondingResponding

0.500.50 0.00010.0001 0.550.55 0.00010.0001


CDI Scores at 12 monthsCDI Scores at 12 months

118

19 16

109

13 17

122

21 20

0

20

40

60

80

100

120

140

Words Understood Words Produced Phrases Understood

HLFPCNTL

p=0.8791

p=0.5472 p=0.2709


CDI Scores at 12 monthsCDI Scores at 12 months

1216

28

1216

27

13

23

36

0

5

10

15

20

25

30

35

40

Early Gestures Later Gestures Total Gestures

HLFPCNTL

p=0.0163

p=0.0231p=0.3863

* *

* *

*vs Control


Conclusions for MothersConclusions for Mothers

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. All 3 groups report similar impact on the family and support at 6 months.

3. Mothers of infants with HL, however, reported sig IOF and lower support than the other groups at 12 months.


Conclusions for MothersConclusions for Mothers

5.5. Both Both stress levels and lower total stress levels and lower total support are each associated with support are each associated with IOF IOF at 12 m.at 12 m.

6.6. Mothers of infants with HL perceive Mothers of infants with HL perceive higher empowerment at 6 and 12m for higher empowerment at 6 and 12m for family and service provision than for family and service provision than for community & political areas. community & political areas.

7.7. However, mothers of NICU infants with However, mothers of NICU infants with HL perceive higher empowerment for HL perceive higher empowerment for community & political areas than community & political areas than mothers of WB nursery infants with HL.mothers of WB nursery infants with HL.


Conclusions for Infants at 12 mConclusions for Infants at 12 m

1.1. 42% of infants in the study are NICU grads.42% of infants in the study are NICU grads.

2.2. 100% of infants with HL are receiving EI 100% of infants with HL are receiving EI compared to 31% of FP and 14% of controls.compared to 31% of FP and 14% of controls.

3.3. All infant study groups have similar words All infant study groups have similar words understood, words produced, and early understood, words produced, and early gestures.gestures.

4.4. Infants with HL or FP findings have fewer later Infants with HL or FP findings have fewer later gestures and total gestures than control gestures and total gestures than control infants.infants.


Conclusions for StudyConclusions for Study1.1. These findings suggest that for These findings suggest that for

families of infants with HL, impact on families of infants with HL, impact on the family persists over time, and the family persists over time, and that mothers need the continued that mothers need the continued support of both their families and support of both their families and professionals to optimize family and professionals to optimize family and child outcomes.child outcomes.

2.2. Infants with HL who are participating Infants with HL who are participating in EI have similar number of words in EI have similar number of words understood and words produced at 12 understood and words produced at 12 m of age as compared to controls.m of age as compared to controls.



Matching Success by GroupMatching Success by Group 25 HL subjects to be matched25 HL subjects to be matched

CNTL:HL target 2:1CNTL:HL target 2:1 FP:HL target at least 1:1FP: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%


Correlation of Stress Scores Correlation of Stress Scores with Financial Impact on the with Financial Impact on the

FamilyFamily6m6m 12m12m


Total StressTotal Stress 0.440.44 0.00020.0002 0.540.54 0.00010.0001


0.300.30 0.01350.0135 0.460.46 0.00020.0002


0.440.44 0.00020.0002 0.340.34 0.00850.0085

Difficult ChildDifficult Child 0.350.35 0.00370.0037 0.420.42 0.00100.0010


Correlation of Impact on the Correlation of Impact on the Family Sub-Scales with Total Family Sub-Scales with Total

StressStress6m6m 12m12m

IOF scoresIOF scores rr pp rr pp

Disruption of Disruption of PlanningPlanning

0.540.54 0.00010.0001 0.590.59 0.00010.0001

Caretaker Caretaker BurdenBurden

0.650.65 0.00010.0001 0.430.43 0.00070.0007

Familial Familial BurdenBurden

0.360.36 0.00280.0028 0.610.61 0.00010.0001

Total ImpactTotal Impact 0.620.62 0.00010.0001 0.670.67 0.00010.0001


Parent/Caregiver Involvement Parent/Caregiver Involvement ScaleScale

Code Amount & Quality of:Code Amount & Quality of: Verbal InvolvementVerbal Involvement ResponsivenessResponsiveness Play InvolvementPlay Involvement Control/DirectivesControl/Directives Positive RegardPositive Regard Negative RegardNegative Regard


PCIS (cont.)PCIS (cont.)

General General Impressions:Impressions: AvailabilityAvailability AcceptanceAcceptance AtmosphereAtmosphere EnjoymentEnjoyment

Emotional Emotional Availability:Availability: SensitivitySensitivity ScaffoldingScaffolding IntrusiveIntrusive StructuringStructuring HostilityHostility

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EHDI Conference 3.3.05 1 RI EHDI: Mediating Factors on Maternal Stress & Empowerment Betty Vohr, MD...

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