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
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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’
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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
2
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.
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
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
6
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
Study GroupsStudy Groups MediatorsMediators Caregiver OutcomesCaregiver Outcomes
Intermediary OutcomeIntermediary Outcome
7
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
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:
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)
10
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
*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
26.827.2
25.8
25.2
25.7
24.6
23
23.5
24
24.5
25
25.5
26
26.5
27
27.5
6 months 12 months
Mod-ProfMildCntl
p=0.5886 p=0.1642
n=16 n=12 n=72 n=9 n=13 n=74
38
Financial Impact Scores 6 & 12 mPossible range 2-8
4.1
4.3
4.1
3.83.7
3.6
3.2
3.4
3.6
3.8
4
4.2
4.4
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
* +
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 24-96 Meadow-Orlans
72.973.2
77.3
76.1
70
71
72
73
74
75
76
77
78
6m 12m
Mod-Prof
Mild
P=NS P=NS
42
Impact of HL on Family Scores at 6 & 12m
Scale Mod-Prof Unil/Mild
+ Communication 6m
12m
23.2
22.3
25.8
25.5
+ Stress 6m
12m
22.0
23.6
22.4
23.2
+ Relationships 6m
12m
22.6
22.3
23.6
22.7
43
Selected Items form the Impact of Childhood HL on the Family
• Communication
• Stress
• Relationships
44
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%
4% 0%
45
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%
4% 0%
46
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%
0% 0%
Exploring Relationships between Possible
Mediators & Stress/Impact
48
Correlations: Illustrative Graphs
40
45
50
55
60
65
70
0 10 20 30 40 50
0
- 0.2
- 0.3
- 0.5
- 0.6
X = Mediator
X
Y
Y =
O
utco
me
49
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
50
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
51
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
52
Family Resource ScaleFamily Resource Scale: Selected Items Pertaining to
Maternal Perceptions of Adequate Time & Money
53
Family Resource Scale: Sig Associations of Selected Items with Stress/Impact (total cohort)
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
55
Fitting it All TogetherFitting it All Together:Multivariate Analysis
56
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
57
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
58
3 Family Presentations
• Family with Low Reported Stress/Impact
• Family with High Reported Stress/Impact
• Culturally Deaf Family
59
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.
60
Family Results: Low Stress/Impact6m Unil/Mild
Mean12m Unil/Mild
Mean
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
61
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.
62
Family Results: High Stress/Impact6m Mod-Prof
Mean12m Mod-Prof
Mean
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
63
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.
64
Culturally Deaf Family Results6m Mod-Prof
Mean12m Mod-Prof
Mean
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
65
Comparison of Stress & Adaptation to HL in 3 Families at 6m
48
9693
807684
0
20
40
60
80
100
120
Stress + Adapt
Low Stress
High Stress
Cult Deaf
66
Conclusions
67
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
Study GroupsStudy Groups MediatorsMediators Caregiver OutcomesCaregiver Outcomes
Intermediary OutcomesIntermediary Outcomes
At 6 & 12mAt 6 & 12m
At 6m onlyAt 6m only
68
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.
69
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
Study GroupsStudy Groups MediatorsMediators Caregiver OutcomesCaregiver Outcomes
Intermediary OutcomesIntermediary Outcomes
70
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.
71
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
74
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
75
Group Characteristics
HL
(n=32)
FP
(n=37)
CNTL
(n=62)
P
Male 59% 73% 63% 0.450
NICU 63% 46% 61% 0.258
VLBW 53% 35% 17% 0.002
76
Group Environmental Characteristics
HL (n=26)
FP (n=36)
CNTL (n=53)
P
≤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
77
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
78
HL Group - Hearing Loss Type
– 23 sensorineural– 6 permanent conductive– 4 auditory neuropathy– Ranges from mild to profound; unilateral and
bilateral HL
79
Impact on Family Subscales at 12m
4
7.4
5.6
3.8
6.9
5.2
3.5
6.7
5.3
0
1
2
3
4
5
6
7
8
Financial Impact Familial Burden Caretaker Burden
HLFPCNTL
p=0.0509
p=0.1580
p=0.2815
*
*vs Control
80
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
81
12 Month Compliance & Attritionas of 12.31.05
• 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
82
18 Month Compliance & Attritionas of 12.31.05
• 72 18m visits completed
• 1 HL resolved – ineligible
• 4 “refused”
• 5 “withdrawn”
• 1 “sick”
• 4 “lost”
• 72/86=84% compliance at 18m
83
Multiples by New Analytic Group
• Bilateral Mod-Prof = 7
• Unilateral/Mild = 2
• Control = 22
Backup Slides:Assessments with additional
Scores & Subscales
85
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)
86
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