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
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.
2
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
3
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
4
Original Study Design
Study Groups
Mediators
• HL
•Resources & support
• Fail screen/
pass rescreen
•Commun. Effectiveness
• Pass screen
•Impact of HL
•EI experiences
•Level
of stress
•Level
of
Empowerment
•Positive
•Impact of FP
•
Caregiver Outcomes
Adaptations
•Increased
Commun.
Effectiveness
Perception of
child behavior and
child language
Mediator/Child Outcomes
5
Study Design
Study Groups
Mediators
• HL
•Resources & support
• Fail screen/
pass rescreen
•Commun. Effectiveness
• Pass screen
•Impact of HL
•EI experiences
•Impact of FP
Caregiver Outcomes
•Level
of stress
•Level
of
Empowerment
•Positive
Adaptations
•Increased
Commun.
Effectiveness
•
Perception of child
behavior/language
• Level of impact on family
Mediator/Child Outcomes
Intermediary Outcome
6
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
7
Matching Criteria
• Gender
• NICU vs Well-Baby Nursery
• Date of Birth (+/- 30 to 90 days)
• Hospital of Birth
• Maternal Education
• Race/Ethnicity
• Health Insurance
8
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)
9
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
10
Recruitment by Study Group:
Families of:
• Newborns with HL
• False-Positives
• Controls
•
Total
n
33
37
62
132
11
Assessments Completed thru 12.31.05 (n)
6m
12m
18m
HL
29
23
19
FP
27
27
21
CNTL
45
47
32
Total: 101
97
72
Compliance: 98%
90%
84%
34 subjects enrolled after 6-10m window
2 subjects enrolled after 12-16m window
12
Initial Results
13
Initial Stress & Impact Scores
Total Stress
6m
12m
% High Stress
6m
12m
Total Impact
6m
12m
HL
FP
CNTL
P
66.4
68.3
68.3
67.2
67.4
66.8
0.9114
0.9378
14
4
15
15
18
11
0.887
0.477
26.4
26
25.6
25
25.7
24.5
0.7112
0.3089
14
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.
15
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.
16
New Analytic Groups:
Group
• Bilat. Mod-Prof HL
n
17*
• Unilateral/Mild HL
15
• Control
99
*One family with Deaf child of Deaf parents excluded from
stress & impact analysis
17
Hypotheses:
• Mothers of infants with bilateral moderate-toprofound 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.
18
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.
19
Distribution of Visits:
Mod-Prof HL
Mild HL
Control
Total
6m
12m
16
12
72
9
13
74
100
96
20
Maternal Characteristics*
Mod-Prof
(n=12)
Mild
(n=14)
Cntl
(n=89)
P
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
43 ± 16
40 ± 13
43 ± 12
0.631
Age
SES
*Mothers with multiples enrolled in study are counted once here
21
Child Characteristics
Mod-Prof Unil/Mild
(n=17)
(n=15)
Female
Cntl
(n=99)
P
41%
40%
33%
0.752
6%
13%
9%
0.784
NICU
82%
40%
56%
0.042
VLBW
76%
27%
24%
0.001
<37 weeks
82%
47%
46%
0.022
Non-White
22
Types of Hearing Loss
14
13
12
Mod-Prof
Mild
10
8*
8
6
5
4
3
2
2**
1
0
SNHL
*2 mild bilateral
COND
AN
**1 mild bilateral
23
Percent Early Intervention
Participation by Group
100
90
80
Percent
70
p=0.001
60
50
40
30
20
10
0
100%
87%
29%
Mod-Prof
Mild
Cntl
n=17
n=13
n=29
24
HL Group – Entrance in EI
Mean chronologic age at entrance into EI:
Mean (m)
Entire HL Group
3.8 ± 2
Range
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
25
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
26
Results
27
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.
28
Total Resources Scores at 6 & 12m
Possible range 31-155
126
125
124
123
122
121
120
119
118
117
p=0.8470
Mod-Prof
p=0.7040
124.5
Mild
124.9
Cntl
122.3
122
120.8
119.8
n=16
n=12
6m
n=72
n=9
n=13
12m
n=74
29
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.
30
Total Support Scores at 6 & 12 m
Possible range 18-90
40
39
p=0.4014
p=0.9656
Mod-Prof
39.1
Unil/Mild
Cntl
37.8
38
36.8
37
36.2
36
36
35.9
35
34
n=16
n=12
6m
n=72
n=9
n=13
12m
n=74
31
Support: General Professional Services
Scores at 6 & 12m
Possible range 2-10
8
7
p=0.0041
6.9
Mod-Prof
*+
Mild
p=0.0040
* vs Control
+ vs Unil/Mild
+
*
7
Cntl
6
5
4.9
5.1
n=12
n=72
4.7
4.7
n=13
n=72
4
3
2
1
0
n=16
6m
n=9
12m
32
Support: Special Professional Services
Scores at 6 & 12m
Possible range 3-10
8
p=0.0596
Mod-Prof
Mild
7
6
5.5
5
p=0.0453
6.8
* vs Control
+ vs Unil/Mild
*+
Cntl
+
4.2
4.5
4.6
4.8
n=11
n=43
4
3
2
1
0
n=16
n=12
6m
n=37
n=9
12m
33
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.
34
Total Stress Scores at 6 & 12 m
Possible range 36-180
p=0.8338
68.5
68
67.5
67
66.5
66
65.5
65
64.5
64
63.5
63
p=0.9807
67.8
67.4
67.1
67.8
67
64.7
Mod-Prof
Mild
Cntl
n=16
n=12
6m
n=72
n=9
n=13
n=74
12m
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 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.
36
Total Impact on the Family Scores
at 6 & 12 m
Possible range 14-56
p=0.1642
p=0.5886
27.5
27
27.2
Mod-Prof
Mild
Cntl
26.8
26.5
25.8
26
25.7
25.5
25.2
25
24.6
24.5
24
23.5
23
n=16
n=12
n=72
6 months
n=9
n=13
n=74
12 months
37
Financial Impact Scores 6 & 12 m
Possible range 2-8
p=0.0283
p=0.1052
4.4
4.2
4.1
4.1
* vs Control
+ vs Unil/Mild
4.3
*+
Mod-Prof
Mild
Cntl
4
3.8
3.8
3.7
3.6
3.6
3.4
3.2
n=16
n=12
6 months
n=72
n=9
n=13
n=74
12 months
38
A Closer Look
at the 2 Groups of Children with HL
39
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.
40
Positive Adaptation Scores at 6 & 12m
Possible range 24-96
78
77
77.3
P=NS
P=NS
76.1
Mod-Prof
Mild
76
75
74
73
Meadow-Orlans
73.2
72.9
72
71
70
6m
12m
41
Impact of HL on Family Scores
at 6 & 12m
Scale
+ Communication
6m
12m
Mod-Prof
23.2
22.3
Unil/Mild
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
42
Selected Items form the Impact
of Childhood HL on the Family
• Communication
• Stress
• Relationships
43
Impact of HL on Family Communication
Subscale Analysis- HL cohort only
• “My communication skills are
quite adequate for my child’s
needs.”
Agree or Strongly Agree
6m
12m
93%
91%
• “I wish I could communicate
as well with my child with HL
as I do with other hearing
children.”
39%
29%
• “My child with HL is often left
out of family conversations
because of communication
problems.”
4%
0%
44
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.”
Agree or Strongly Agree
6m
12m
14%
0%
• “Much of the stress in my
family is related to HL.”
4%
13%
• “Parents of children with HL
are expected to do too many
things for them. This is a
burden for me.”
4%
0%
45
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%
46
Exploring Relationships
between Possible
Mediators &
Stress/Impact
Correlations: Illustrative Graphs
Y
70
0
Y = Outcome
65
60
- 0.2
55
- 0.3
50
- 0.5
45
- 0.6
X
40
0
10
20
30
X = Mediator
40
50
48
Sig Associations of Total Resources with
Stress Scores at 6 & 12m for Total Cohort
Stress Scores
Total Stress
6m
r
12m
r
-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
49
Sig. Associations of Total Support with
Stress at 6 & 12 m for Total Cohort
Stress Scores
 Total Stress
6m
r
12m
r
-0.23**
-0.15
 Parental Distress
-0.24*
-0.13
*P<0.05
**P<0.01
***P<0.001
50
Sig Associations of Total 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
51
Family Resource Scale:
Selected Items Pertaining to
Maternal Perceptions of Adequate
Time & Money
52
Family Resource Scale: Sig Associations of
Selected Items with Stress/Impact (total cohort)
 Time to get enough sleep or  STRESS
rest
 IMPACT
6m
12m
-0.41*** -0.25*
-0.33*** -0.43***
 Time for family to be
together
 STRESS -0.14
 IMPACT -0.27**
 Time to be with spouse or
partner
 STRESS -0.41*** -0.35***
 IMPACT -0.36*** -0.48***
*P<0.05 **P<0.01 ***P<0.001
-0.22*
-0.21*
53
Family Resource Scale: Sig Associations of
Selected Items with Stress/Impact (total cohort)
6m
12m
-0.46*** -0.15
-0.35*** -0.19
 Money to buy necessities
 STRESS
 IMPACT
Money to pay monthly bills
 STRESS -0.33*** -0.11
 IMPACT -0.38*** -0.25*
Money to save
 STRESS -0.29** -0.19
 IMPACT -0.31** -0.35***
*P<0.05 **P<0.01 ***P<0.001
54
Fitting it All Together:
Multivariate Analysis
55
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
NICU stay
Maternal Age
SES
Total Resources
12m
b= 8.8**
b= - 0.7**
b= 0.2
b= - 0.5***
Model R2=0.41
p=0.0001
6.4*
- 0.5
0.3*
- 0.3*
Model R2=0.21
p=0.0067
*P<0.05 **P<0.01 ***P<0.001
56
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
NICU stay
Maternal Age
SES
Total Resources
12m
b= 1.4*
b= - 0.1*
b= 0.03
b= - 0.1***
Model R2=0.32
p=0.0001
1.3
0.04
0.05
- 0.1***
Model R2=0.32
p=0.0001
*P<0.05 **P<0.01 ***P<0.001
57
3 Family Presentations
• Family with Low Reported Stress/Impact
• Family with High Reported Stress/Impact
• Culturally Deaf Family
58
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.
59
Family Results: Low Stress/Impact
6m
Resour.
122
Unil/Mild
Mean
119.8
12m
134
Unil/Mild
Mean
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
60
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.
61
Family Results: High Stress/Impact
6m
Resour.
94
Mod-Prof
Mean
120.8
12m
104
Mod-Prof
Mean
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
62
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.
63
Culturally Deaf Family Results
6m
Resour.
122
Mod-Prof
Mean
120.8
12m
128
Mod-Prof
Mean
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
64
Comparison of Stress & Adaptation to
HL in 3 Families at 6m
120
93
100
76
80
60
Low Stress
High Stress
Cult Deaf
96
80
84
48
40
20
0
Stress
+ Adapt
65
Conclusions
66
Findings: Total Cohort
Study Groups
Mediators
Bilat Mod-Prof HL
↑ Resources
Unil/Mild HL
↑ Time & Money
Control
Caregiver Outcomes
↓ Parenting Stress
↑ Parenting Stress
↑ Support
NICU Stay
↑ Maternal Age
At 6m only
↓ Impact on Family
At 6 & 12m
↓ Financial Impact
↑ Impact on Family
Intermediary Outcomes
67
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.
68
Findings: HL Group Only
Study Groups
Mediators
↑ General & Special
Bilat Mod-Prof HL
Unil/Mild HL
Prof. Services at 6
& 12m
Enrolled in EI by
mean chron. age of
3.8m
Caregiver Outcomes
= Parenting
Stress at 6 & 12m
= High Positive
Adaptations at 6
& 12m
↑ Financial Impact at 12m
= Impact on the Family at 6
& 12m
Intermediary Outcomes
69
Conclusions from HL Group Analysis
1. 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 modprof 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.
70
Implications for Early Intervention
1. 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.
71
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
EHDI 2.3.06
72
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
74
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
75
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
76
Multiples by Original Cohort
n
HL
9
Gender
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
77
HL Group - Hearing Loss Type
– 23 sensorineural
– 6 permanent conductive
– 4 auditory neuropathy
– Ranges from mild to profound; unilateral and
bilateral HL
78
Impact on Family Subscales
at 12m
8
7.4
HL
FP
CNTL
7
6
5
4
4
*
3.8
6.9 6.7
*vs Control
5.6
5.2 5.3
3.5
3
2
1
0
Financial Impact
p=0.0509
Familial Burden
Caretaker Burden
p=0.1580
p=0.2815
79
6 Month Compliance & Attrition
as 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
80
12 Month Compliance & Attrition
as 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
81
18 Month Compliance & Attrition
as 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
82
Multiples by New Analytic Group
• Bilateral Mod-Prof = 7
• Unilateral/Mild = 2
• Control = 22
83
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)
85
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 1260)
– Difficult Child (range 12-60)
• 1 Biased Response Set Score
– Defensive Responding (range 7-35)
86
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
87
Percent with High Stress at 6 & 12m
(>85th percentile)
20
19
18
17
p=0.727
p=0.499
16
14
12
12
10
8
8
% 6 mos.
% 12 mos.
8
6
4
2
0
n=3
0
Mod-Prof
n=1 n=1
n=12 n=9
Unil/Mild
Cntl
88
Conclusions: Bivariate Group Analyses
1. 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.
89
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.
90