Resources: A Strong Predictor of Impact for Families of Infants with HL Betty Vohr, MD Julie...

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

Betty Vohr, MDJulie Jodoin-Krauzyk, MEd, MA

Richard Tucker, BA

Women & Infants’ HospitalProvidence, 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

Faculty Disclosure Information

In 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.

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

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

Original Study Design

•Resources & support

•Commun. Effectiveness

•EI experiences

•Impact of HL

•Impact of FP

•Level of stress

•Level ofEmpowerment

•Positive Adaptations

•Increased Commun. Effectiveness

• HL

• Fail screen/ pass rescreen

• Pass screen

Mediator/Child OutcomesMediator/Child Outcomes

• Perception of child behavior and

child language

Study GroupsStudy Groups MediatorsMediators Caregiver OutcomesCaregiver Outcomes

Study Design

•Resources & support

•Commun. Effectiveness

•EI experiences

•Impact of HL

•Impact of FP

•Level of stress

•Level ofEmpowerment

•Positive Adaptations

•Increased Commun. Effectiveness

• HL

• Fail screen/ pass rescreen

• Pass screen

Mediator/Child OutcomesMediator/Child Outcomes

• Perception of child behavior/language

• Level of impact on family

Intermediary OutcomeIntermediary Outcome

Methods:

1. Enroll families of infants with HL*

2. Identify CNTL & FP matches

3. Recruit CNTL & FP matches thru mail

4. Obtain informed consent

5. Conduct 3 home visits at 6,12, & 18m

( ± 4m)

* No exclusions

Matching Criteria

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

Standardized Assessments at 6, 12 & 18m:

1. Family Resource Scale (Dunst & Leet)

2. Family Support Scale (Dunst et al)

3. Parenting Stress Index (Abidin)

4. Impact on the Family (Stein & Reissman)

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

Initial Data Analysis

• 3 way analysis HL vs. FP vs. CNTL– ANOVA to analyze differences among group

means– Ҳ 2 to analyze differences among proportions

Recruitment by Study Group:

Families of: n• Newborns with HL 33• False-Positives 37• Controls 62

• Total 132

Assessments Completed thru 12.31.05 (n) 6m 12m

HL 29 23 19

FP 27 27 21

CNTL 45 47 32

Total: 101Total: 101 97 97 7272ComplianceCompliance: : 98% 90%98% 90% 84%84%

34 subjects enrolled after 6-10m window

2 subjects enrolled after 12-16m window

Initial Results

Initial Stress & Impact ScoresHL FP CNTL P

Total Stress 6m

12m66.4

0.9114

0.9378

% High Stress 6m

Total Impact 6m

12m26.4

0.7112

0.3089

Findings:

1. At 6 & 12m, no differences were found in stress or impact between the FP and Control groups.

2. HL group was heterogeneous by degree of HL.

Therefore: A New Analytic Approach

1. Control & FP groups were collapsed into a single control group.

2. HL group was divided into 2 groups by degree of HL, to examine effects of severity.

New Analytic Groups:

Group n• Bilat. Mod-Prof HL 17*

• Unilateral/Mild HL 15

• Control 99

*One family with Deaf child of Deaf parents excluded from stress & impact analysis

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.

Data Analysis:1. Three-Way Analysis

– Bilat. Mod-Prof vs. Unil/Mild vs. Controls– ANOVA to analyze differences among group

means– Ҳ 2 to analyze differences among proportions

2. Correlation Analysis to show associations

3. Regression Models to show relationships of predictors with outcomes while controlling for other factors.

Distribution of Visits: 6m 12m

Mod-Prof HL 16 9

Mild HL 12 13

Control 72 74

Total 100 96

Maternal Characteristics*Mod-Prof

(n=12)

(n=14)

(n=89)

Age 32 ± 8 32 ± 6 32 ± 6 0.898

Married 83% 79% 84% 0.867

≤high school 25% 14% 14% 0.300

Primary Lang Non-English

8% 14% 5% 0.449

Medicaid / no Insurance

16% 28% 22% 0.919

SES 43 ± 16 40 ± 13 43 ± 12 0.631

*Mothers with multiples enrolled in study are counted once here

Child CharacteristicsMod-Prof

(n=17)

Unil/Mild

(n=15)

(n=99)

Female 41% 40% 33% 0.752

Non-White 6% 13% 9% 0.784

NICU 82% 40% 56% 0.042

VLBW 76% 27% 24% 0.001

<37 weeks 82% 47% 46% 0.022

Types of Hearing Loss13

SNHL COND AN

Mod-Prof

*2 mild bilateral **1 mild bilateral

Percent Early Intervention Participation by Group

Mod-Prof Mild Cntl

n=17 n=13 n=29

87%100% 29%

p=0.001

HL Group – Entrance in EIMean 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

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

Results

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.

Total Resources Scores at 6 & 12mPossible range 31-155

6m 12m

Mod-Prof

p=0.8470 p=0.7040

n=16 n=12 n=72 n=9 n=13 n=74

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.

Total Support Scores at 6 & 12 mPossible range 18-90

36.236 35.9

6m 12m

Mod-Prof

Unil/ Mild

p=0.4014 p=0.9656

n=16 n=12 n=72 n=9 n=13 n=74

Support: General Professional Services Scores at 6 & 12m Possible range 2-10

4.9 4.75.1

6m 12m

Mod-Prof

p=0.0041 p=0.0040

n=16 n=12 n=72 n=9 n=13 n=72

* + * + * vs Control+ vs Unil/Mild

Support: Special Professional Services Scores at 6 & 12m Possible range 3-10

4.24.64.5 4.8

6m 12m

Mod-Prof

p=0.0596 p=0.0453

n=16 n=12 n=37 n=9 n=11 n=43

* vs Control+ vs Unil/Mild

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.

Total Stress Scores at 6 & 12 mPossible range 36-180

67.167.4

67.867.8

6363.5

6464.5

6565.5

6666.5

6767.5

6868.5

6m 12m

Mod-Prof

n=16 n=12 n=72 n=9 n=13 n=74

p=0.8338

p=0.9807

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.

Total Impact on the Family Scores at 6 & 12 m Possible range 14-56

26.827.2

6 months 12 months

Mod-ProfMildCntl

p=0.5886 p=0.1642

n=16 n=12 n=72 n=9 n=13 n=74

Financial Impact Scores 6 & 12 mPossible range 2-8

3.83.7

6 months 12 months

Mod-ProfMildCntl

p=0.1052 p=0.0283

n=16 n=12 n=72 n=9 n=13 n=74

* vs Control+ vs Unil/Mild

A Closer Look at the 2 Groups of Children with HL

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.

Positive Adaptation Scores at 6 & 12m Possible range 24-96 Meadow-Orlans

72.973.2

6m 12m

Mod-Prof

P=NS P=NS

Impact of HL on Family Scores at 6 & 12m

Scale Mod-Prof Unil/Mild

+ Communication 6m

+ Stress 6m

+ Relationships 6m

Selected Items form the Impact of Childhood HL on the Family

• Communication

• Stress

• Relationships

Impact of HL on Family Communication Subscale Analysis- HL cohort only

• “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

6m 12m

93% 91%

39% 29%

Impact of HL on Family Stress Subscale Analysis - HL cohort only

• “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 6m 12m 14% 0%

4% 13%

Impact of HL on Family Relationships Subscale Analysis - HL cohort only

• “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

6m 12m

100% 96%

89% 81%

Exploring Relationships between Possible

Mediators & Stress/Impact

Correlations: Illustrative Graphs

0 10 20 30 40 50

X = Mediator

Sig Associations of Total ResourcesTotal Resources with Stress Scores at 6 & 12m for Total Cohort

6m 12m

Stress Scores r r

Total Stress -0.59*** -0.39***

Parental Distress -0.62*** -0.40***

Parent-Child Dysf Inter -0.33*** -0.20*

Difficult Child -0.36*** -0.33***

*P<0.05 **P<0.01 ***P<0.001

Sig. Associations of Total SupportTotal Support with Stress at 6 & 12 m for Total Cohort

6m 12m

Stress Scores r r

Total Stress -0.23** -0.15

Parental Distress -0.24* -0.13

*P<0.05 **P<0.01 ***P<0.001

Sig Associations of Total ResourcesTotal Resources with Impact on Family at 6 & 12m: Total Cohort

6m 12m

Impact Scores r r

Total Impact -0.48*** -0.48***

Financial Impact -0.34*** -0.45***

Familial Burden -0.25* -0.38***

Caretaker Burden -0.45*** -0.36***

Disrupt Plan -0.48*** -0.44***

*P<0.05 **P<0.01 ***P<0.001

Family Resource ScaleFamily Resource Scale: Selected Items Pertaining to

Maternal Perceptions of Adequate Time & Money

Family Resource Scale: Sig Associations of Selected Items with Stress/Impact (total cohort)

Time to get enough sleep or rest

Time for family to be together

Time to be with spouse or partner

6m 12m STRESS -0.41*** -0.25* IMPACT -0.33*** -0.43***

STRESS -0.14 -0.22* IMPACT -0.27** -0.21*

STRESS -0.41*** -0.35*** IMPACT -0.36*** -0.48***

*P<0.05 **P<0.01 ***P<0.001

Family Resource Scale: Sig Associations of Selected Items with Stress/Impact (total cohort)

Money to buy necessities

Money to pay monthly bills

Money to save

6m 12m

STRESS -0.46*** -0.15

IMPACT -0.35*** -0.19

STRESS -0.33*** -0.11

IMPACT -0.38*** -0.25*

STRESS -0.29** -0.19

IMPACT -0.31** -0.35***

*P<0.05 **P<0.01 ***P<0.001

Fitting it All TogetherFitting it All Together:Multivariate Analysis

Stress: Regression Model• Variables entered for total cohort:

– NICU, mod-prof HL, mild HL, maternal age, married, SES, total support, total resources: sig. predictors shown

6m 12m

NICU stay b= 8.8** 6.4*Maternal Age b= - 0.7** - 0.5SES b= 0.2 0.3*Total Resources b= - 0.5*** - 0.3*

Model R2=0.41 Model R2=0.21 p=0.0001p=0.0067 *P<0.05 **P<0.01 ***P<0.001

Impact on Family: Regression Model• Variables entered for total cohort:

– NICU, mod-prof HL, mild HL, maternal age, married, SES, total support, total resources: sig. predictors shown

6m 12m

NICU stay b= 1.4* 1.3Maternal Age b= - 0.1* 0.04SES b= 0.03 0.05Total Resources b= - 0.1*** - 0.1***

Model R2=0.32 Model R2=0.32 p=0.0001p=0.0001

*P<0.05 **P<0.01 ***P<0.001

3 Family Presentations

• Family with Low Reported Stress/Impact

• Family with High Reported Stress/Impact

• Culturally Deaf Family

Family with Low Total Stress/Impact Characteristics

Child:

• Male

• Full-Term

• No NICU stay

• Unilateral severe SNHL due to Mondini’s Dysplasia

• HL dx at 1.5m

• First lang = Spanish

Mother:

• Hispanic

• Married

• Bilingual – Spanish & English

• Private Insurance

• Partial College

• EI began at 2 wks.

Family Results: Low Stress/Impact6m Unil/Mild

Mean12m Unil/Mild

Resour. 122 119.8 134 124.5

Support 49 37.8 63 36.2

Stress 48 64.7 50 67.8

Impact 20 25.8 17 25.2

+ Adapt Imp. of HL

96 77.3 93 76.1

Family with High Total Stress/Impact Characteristics

Child:• Female; twin• 24 weeks gestation• NICU stay 129 days• Mild Cerebral Palsy• Bilateral prof AN • HL dx at 3.5m

chron; 0m corr.• First lang = English

Mother:

• White

• Married

• English speaking

• Private Insurance

• Master’s Degree

• EI began at 4.5m chron; 1.0m corr.

Family Results: High Stress/Impact6m Mod-Prof

Mean12m Mod-Prof

Resour. 94 120.8 104 122

Support 38 39.1 39 36.8

Stress 93 67.1 73 67.4

Impact 30 26.8 35 27.2

+ Adapt Imp. of HL

80 72.9 66 73.2

Culturally Deaf Family Characteristics

Child:• Male• 32 weeks gestation• NICU 10 days• Bilateral profound

SNHL• HL dx at 2m chron;

0m corr.• First lang = ASL

Mother:• Culturally Deaf• Married• Bilingual – ASL &

English• Private Insurance• Master’s Degree• EI began at 4m

chron; 2m corr.

Culturally Deaf Family Results6m Mod-Prof

Mean12m Mod-Prof

Resour. 122 120.8 128 122

Support 39 39.1 36 36.8

Gen Serv 6 6.9 3 7.0

Spec Serv 4 5.5 8 6.8

Stress 76 67.1 81 67.4

Impact 30 26.8 30 27.2

+ Adapt 84 72.9 73 73.2

Comparison of Stress & Adaptation to HL in 3 Families at 6m

807684

Stress + Adapt

Low Stress

High Stress

Cult Deaf

Conclusions

Findings: Total Cohort

↑↑ ResourcesResources

↑↑ Time & MoneyTime & Money

↑↑ SupportSupport

NICU StayNICU Stay

↑↑ Maternal AgeMaternal Age

↓↓ Parenting Parenting StressStress

↑↑ Parenting Parenting StressStress

Bilat Mod-Prof Bilat Mod-Prof HLHL

Unil/Mild HL Unil/Mild HL

ControlControl

↓↓ Impact on FamilyImpact on Family

↓↓ Financial ImpactFinancial Impact

↑ ↑ Impact on FamilyImpact on Family

Intermediary OutcomesIntermediary Outcomes

At 6 & 12mAt 6 & 12m

At 6m onlyAt 6m only

Conclusions from Multivariate Analysis

1. ↑ total resources was the most consistent ameliorator to stress & impact at 6 & 12m.

2. Having a child that required NICU care contributed to ↑ parenting stress at 6 & 12m.

3. Increased maternal age was associated with ↓ parenting stress & impact at 6m.

Findings: HL Group Only

↑↑ General & General & Special Prof. Special Prof. Services at 6 & Services at 6 & 12m12m

Enrolled in EI by Enrolled in EI by mean chron. age mean chron. age of 3.8mof 3.8m

= Parenting = Parenting Stress at 6 & Stress at 6 & 12m12m

= = High Positive High Positive Adaptations at Adaptations at 6 & 12m6 & 12m

Bilat Mod-Prof Bilat Mod-Prof HLHL

Unil/Mild HLUnil/Mild HL

↑ ↑ Financial Impact at Financial Impact at 12m12m

= Impact on the Family at = Impact on the Family at 6 & 12m6 & 12m

Intermediary OutcomesIntermediary Outcomes

Conclusions from HL Group Analysis1. In the first year of life, families of children

with HL, regardless of degree, received EI as by a mean age of 3.8m.

2. Similar parenting stress levels and impact on the family were reported in both bilat mod-prof and unil/mild groups.

3. Both mothers of children with bilat mod-prof and unil/mild HL had similar, high positive adaptations to the impact of HL.

4. Resources & support contribute more to stress & impact than degree of HL.

Implications for Early Intervention1. EI service providers must remain mindful

of the important role of family resources and support, as it relates to parenting stress and impact.

2. Increased funding and support for early general and specialized professional services for families of children with HL is essential to ↓ stress & ↓ impact and strengthen families’ abilities to adapt to ensuing communication challenges.

EHDI 2.3.06 72

Acknowledgements to Project Personnel

• Principal Investigator– Betty Vohr

• Co-Investigators– Mary Jane Johnson– Deborah Topol

• CDC Investigator– Pamela Costa

• Study Coordinator– Julie Jodoin-Krauzyk

• Data Analyst– Richard Tucker

• Research Assistants– Jyllian Anterni– Cara Dalton

Backup Slides

Matching Success by Group

• 37 Matching Groups• 26 (70%) at least 1FP & 1CNTL• 22 (59%) match CNTL:HL 2:1 or 2:2

• 32 matched groups closed– 26 (81%) match at least 1:1– 22 (69%) match CNTL:HL 2:1 or 2:2

– 5 groups currently still recruiting matches

Group Characteristics

(n=32)

(n=37)

(n=62)

Male 59% 73% 63% 0.450

NICU 63% 46% 61% 0.258

VLBW 53% 35% 17% 0.002

Group Environmental Characteristics

HL (n=26)

FP (n=36)

CNTL (n=53)

≤high school 19% 19% 9% 0.510

Medicaid or no Insurance

23% 28% 19% 0.354

Non-Native English

12% 11% 2% 0.100

SES 41±14 41±12 45±12 0.255

Multiples by Original Cohort

n GenderHL 9 5 F; 4 M (1 triplet)

FP 4 0 F; 4 M

CNTL 18 10 F (2 triplets); 8 M

• 15 Mothers & 31 Children comprising 15 families

HL Group - Hearing Loss Type

– 23 sensorineural– 6 permanent conductive– 4 auditory neuropathy– Ranges from mild to profound; unilateral and

bilateral HL

Impact on Family Subscales at 12m

Financial Impact Familial Burden Caretaker Burden

HLFPCNTL

p=0.0509

p=0.1580

p=0.2815

*vs Control

6 Month Compliance & Attritionas of 12.31.05

• 138 enrolled

• 101 6m visits completed

• 34 joined late for 6m visit

• 1 HL resolved – ineligible

• 2 “refused”

• 101/103=98% compliance at 6m

• 97 6m visits completed• 2 joined late for 12m visit• 1 HL resolved – ineligible• 6 “refused”• 5 “lost”• 1 “withdrawn”• 1 “sick”• 97/108=90% compliance at 12m

• 72 18m visits completed

• 1 HL resolved – ineligible

• 4 “refused”

• 5 “withdrawn”

• 1 “sick”

• 4 “lost”

• 72/86=84% compliance at 18m

Multiples by New Analytic Group

• Bilateral Mod-Prof = 7

• Unilateral/Mild = 2

• Control = 22

Backup Slides:Assessments with additional

Scores & Subscales

Family Support Scale• 18 questions• Likert Scale from 1 to 5

– Not at All Helpful to Extremely Helpful• Total Support Score (18-90)• 6 Subscales

– Immediate Family– Formal Kinship – Informal Kinship– Social Organization– General Professional Services (2-10)

– Special Professional Services (3-15)

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

– Strongly Agree to Strongly Disagree• 1 Total Stress Score (36-180)• 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)

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

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

Mod-Prof Unil/ Mild Cntl

% 6 mos.% 12 mos.

p=0.727 p=0.499

n=3 n=1 n=12n=1 n=9

Conclusions: Bivariate Group Analyses1. Although all mothers reported varying

degrees of parenting stress at 6 & 12m (ranging from low to high), there were no sig. differences across groups.

2. Families with children with bilat mod-prof HL reported ↑ use of general and specialized professional services at 6 & 12m.

3. Mothers of infants with bilat mod-prof HL reported financial impact at 12m.

Conclusions from Correlation Analysis of Total Cohort

1. ↑ resources was associated with ↓ stress, ↓ impact, and ↓ financial impact at 6 & 12m.

2. ↑ resources of time and money were consistently associated with ↓ stress levels & ↓ impact on the family.

3. ↑ support was associated with ↓ total parenting stress and ↓ parental distress at 6m only.

Resources: A Strong Predictor of Impact for Families of Infants with HL Betty Vohr, MD Julie...

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