Childhood Chronic
Illness: Enhancing Family
Capabilities using the Building
on Family Strengths
Curriculum
Gail M Kieckhefer, PhD, PNP-BS, ARNP
Joanne Montgomery Endowed Professor
Family & Child Nursing
Gail Kieckhefer, PhD, PNP-BS, ARNP
Pediatric Nursing Grand Rounds
February 5, 2009
• Purpose of grant (HS013384)
• Need
– Program
– Parent and interdisciplinary team
• Design of the curriculum
– Content
– Processes
• Evaluation plan and results
• Implications for nursing
– Practice
– Future research
Gail Kieckhefer, PhD, PNP-BS, ARNP
Pediatric Nursing Grand Rounds
February 5, 2009
Purpose of Grant
•
•
•
•
Design & test outcomes
Parent education & support curriculum
Randomized clinical trial
Disseminate results
Gail Kieckhefer, PhD, PNP-BS, ARNP
Pediatric Nursing Grand Rounds
February 5, 2009
Impact of Childhood
Chronic illness
• Health Related Outcomes
– Lowered confidence in own competence
– Child as vulnerable
– New knowledge and skills needed
• Change as condition changes
• Change as child develops
– Anxiety, depressive symptoms can emerge
– Family quality of life can suffer
Gail Kieckhefer, PhD, PNP-BS, ARNP
Pediatric Nursing Grand Rounds
February 5, 2009
Need for Parent and
Interdisciplinary Team
Co-Investigators
Key Personnel
Nanci Villareale, nursing
Lyn Kratz, social work
Elizabeth Bennett, health education
Virginia Sharp, statistical analysis
Nancy Uding, parent
Cristine Trahms, nutrition
Shervin Churchill, statistical
analysis
Megan Sety, public health & social
work
Gail Kieckhefer, PhD, PNP-BS, ARNP
Pediatric Nursing Grand Rounds
February 5, 2009
Approaches to Enhance
Health Related Outcomes
• Knowledge & Skills
– Beliefs and behavior change
– Practice
• Support
– Other parents
– Experienced providers
Gail Kieckhefer, PhD, PNP-BS, ARNP
Pediatric Nursing Grand Rounds
February 5, 2009
Design of the Curriculum
Content
• Impact of Living with a Childhood Chronic
Illness: An Overview
– Key issues & challenges
– Managing family life & stress
• Practical skills
• Muscle relaxation
– Introducing the concepts of self-efficacy and
parent-child shared management
– Making an effective action plan
Gail Kieckhefer, PhD, PNP-BS, ARNP
Pediatric Nursing Grand Rounds
February 5, 2009
Design of the Curriculum
Content
• Emotional Dimensions of parenting a
child with chronic illness
– Exploring feelings
– Managing hard feelings
– Self-talk
Gail Kieckhefer, PhD, PNP-BS, ARNP
Pediatric Nursing Grand Rounds
February 5, 2009
Design of the Curriculum
Content
• Impact on the Child
– Parent Leadership Model
– Child directed interactions and play
– Depression in children
– Tricks for helping one’s child manage pain
and stress
Gail Kieckhefer, PhD, PNP-BS, ARNP
Pediatric Nursing Grand Rounds
February 5, 2009
Design of the Curriculum
Content
• Impact on Relationships and Family
Communication
– Strained relationships and communications
– Self-massage
– Effective communication and listening skills
Gail Kieckhefer, PhD, PNP-BS, ARNP
Pediatric Nursing Grand Rounds
February 5, 2009
Design of the Curriculum
Content
• Impact on your Parenting
– Promoting child capabilities through
developmentally appropriate sharedmanagement
– Three styles of communication including
assertive communication
– Using distraction
Gail Kieckhefer, PhD, PNP-BS, ARNP
Pediatric Nursing Grand Rounds
February 5, 2009
Design of the Curriculum
Content
• Working with Large Systems and Finding
Resources
– Healthcare and education
• navigating systems
• things you can do & things you want to teach your child
to do
– Skills for effective partnering & shared decisionmaking within the family & medical home
• listening; observing; positive communication
• advocacy
• conflict management
Gail Kieckhefer, PhD, PNP-BS, ARNP
Pediatric Nursing Grand Rounds
February 5, 2009
Design of the Curriculum
Content
• Transitions and Finding Meaning and
Facing the Future
– Transition Timeline
– The Family Plan
– Finding meaning in your experience
– Transitioning out of the class
Gail Kieckhefer, PhD, PNP-BS, ARNP
Pediatric Nursing Grand Rounds
February 5, 2009
Design of the Curriculum
Processes
•
•
•
•
•
•
7 Weekly, 2 hr sessions
Brief presentations by co-facilitators
Structured parent discussions
Modeling
Action plans
Scripted facilitator manual & parent
manual
Gail Kieckhefer, PhD, PNP-BS, ARNP
Pediatric Nursing Grand Rounds
February 5, 2009
Evaluation Plan and
Results
• Curriculum design
– Individual parents,focus groups & pilot
• Curriculum impact
– Randomized clinical trial
– Baseline, 6 and 12 month follow-up
• Apriori model
• Parent outcomes
Gail Kieckhefer, PhD, PNP-BS, ARNP
Pediatric Nursing Grand Rounds
February 5, 2009
Greater parent-child
shared management
Parent Education
Greater parental
self-efficacy
Increased parent coping
Better emotional health
Parent and child
demographic and
condition characteristics
Gail Kieckhefer, PhD, PNP-BS, ARNP
Pediatric Nursing Grand Rounds
Greater family
quality of life
February 5, 2009
Not screened
N=27
(Not interested after hearing
initial description; not
reachable after their initial
contact)
Total initial contacts from
potential participants
N=233
Excluded
N=78
(Did not meet eligibility criteria;
class times didn’t work; couldn’t commit
to 7 sessions; didn’t return baseline
survey; withdrew before randomization)
Assessed for eligibility
N=207
Randomized
N=129
Withdrew before
classes began and
did not provide any
follow-up
N=1
Treatment at Baseline
N=83
Control at Baseline
N=46
Data not included
in analysis1
N=5
Did not return 6
month survey
N=7
Did not return 6
month survey
N=2
Data not included
in analysis1
N=14
Final Treatment
Analyzed
Final Control
Analyzed
N=61
N=39
Gail Kieckhefer, PhD, PNP-BS, ARNP
Pediatric Nursing Grand Rounds
February 5, 2009
Sample
Parents
92% female
73% married
82% > 12 grade
90% non-Hispanic
Gail Kieckhefer, PhD, PNP-BS, ARNP
Pediatric Nursing Grand Rounds
February 5, 2009
Sample
• Child Characteristics
– 43% female
– 84% mod to severe severity
– 62% impacts child’s ability usually or
always
Gail Kieckhefer, PhD, PNP-BS, ARNP
Pediatric Nursing Grand Rounds
February 5, 2009
Baseline
BFS Baseline Self Efficacy Scores (n=123)
50%
44%
40%
39%
30%
20%
10%
13%
0%
4%
0%
0
2
3
4
→ More Self Efficacy →
Gail Kieckhefer, PhD, PNP-BS, ARNP
Pediatric Nursing Grand Rounds
February 5, 2009
5
Baseline
BFS Baseline Shared Management Scores (n=127)
40%
35%
30%
25%
20%
15%
10%
5%
0%
34%
34%
15%
9%
8%
1
2
3
4
→ More Shared Management →
Gail Kieckhefer, PhD, PNP-BS, ARNP
Pediatric Nursing Grand Rounds
February 5, 2009
5
Baseline
BFS F-COPES Score at Baseline (n=128)
30%
27%
25%
25%
20%
20%
13%
15%
9%
10%
5%
4%
2%
0%
60-69
70-79
80-89
90-99
100-109
→ Better Coping →
Gail Kieckhefer, PhD, PNP-BS, ARNP
Pediatric Nursing Grand Rounds
February 5, 2009
110-119
120-130
Baseline
Baseline Distribution of Depression Scores (CESD-10), n=129
12
10
<10
10-14
8
15-30
6
4
2
0
0 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 26 27
Gail Kieckhefer, PhD, PNP-BS, ARNP
Pediatric Nursing Grand Rounds
February 5, 2009
Baseline
BFS Baseline Quality of Life Score
37%
40%
35%
30%
30%
25%
22%
20%
15%
11%
10%
5%
0%
20-29
30-39
40-49
→ Better Quality of Life →
Gail Kieckhefer, PhD, PNP-BS, ARNP
Pediatric Nursing Grand Rounds
February 5, 2009
50-60
6 Month Analysis
• Did scores rise in intervention parents
• Did scores differ between intervention
and control families at 6 months
Gail Kieckhefer, PhD, PNP-BS, ARNP
Pediatric Nursing Grand Rounds
February 5, 2009
Scale
Average Score diff. after 6
months
P-value 2-tailed paired
ttest, within group
Baseline mean score
Mean score 6 months
later
Treatment
Control
Treatment
Control
Treatment
Control
Treatment
Control
3.6
3.6
3.9
3.5
0.292
0.03
0.002
0.76
3.2
3.2
3.5
3.2
0.30
0.06
0.002
0.54
11.9
11.7
9.7
12.3
-2.21
0.36
0.010
0.70
96.4
96.5
103.1
95.1
6.36
-1.54
<0.001
0.34
36.1
38.9
39.5
39.6
3.19
-0.14
<0.001
0.86
Self Efficacy
↑ better
(1-5)
Shared Management
↑ better
(1-5)
CESD10
↓ better
(0-30)
Cope
↑ better
(29-145)
Quality of Life
↑ better
(15-60)
Paired sample N=110, Treatment n=69, Control n=41
Gail Kieckhefer, PhD, PNP-BS, ARNP
Pediatric Nursing Grand Rounds
February 5, 2009
2-tailed, between Effect size for treatment
groups
group
p-value
All
SELF-EFFICACY
0.049
7.7%
Worst
quartile
22.2%
SHARED
MANAGEMENT
0.097
11.1%
32.0%
CESD10
0.046
18.5%
40.8%
COPE
0.001
6.6%
12.1%
QUALITY OF LIFE
0.010
8.6%
21.7%
Gail Kieckhefer, PhD, PNP-BS, ARNP
Pediatric Nursing Grand Rounds
February 5, 2009
Change by 6 Month
Follow-up
Self Efficacy
4.0
Shared Management
4.0
3.5
3.5
3.0
3.0
2.5
2.5
2.0
2.0
1.5
1.5
1.0
1.0
Baseline
Gail Kieckhefer, PhD, PNP-BS, ARNP
Pediatric Nursing Grand Rounds
6 month
Baseline
February 5, 2009
6 month
Coping
Depressive Symptoms
25
130
120
20
110
15
100
10
90
80
5
70
60
0
Baseline
Gail Kieckhefer, PhD, PNP-BS, ARNP
Pediatric Nursing Grand Rounds
Baseline
6 month
February 5, 2009
6 month
Quality of Life
60
50
40
30
20
10
Baseline
Gail Kieckhefer, PhD, PNP-BS, ARNP
Pediatric Nursing Grand Rounds
6 month
February 5, 2009
Change across 12 Month
Follow-up
Measure
Scale
Factor
Coef.
Std Err.
P-value
Self-Efficacy
1-5
Baseline
0.52
0.09
0.000
high better
Time
0.04
004.
Intervention
0.37
0.10
0.394
95% CI
0.33
0.07
-0.05
0.12
0.17
0.55
0.65
0.85
0.000
Shared-Management
1-5
Baseline
0.76
0.05
high better
Time
0.01
0.05
Intervention
0.11
0.11
0.000
0.870
-0.09
0.11
0.17
0.56
0.60
0.84
-1.26
2.75
0.000
Coping
29-149
Baseline
0.72
0.06
high better
Time
0.74
1.02
Intervention
6.90.
1.69
0.000
0.467
3.58 10.22
0.000
Depressive
0-30
Baseline
0.48
0.08
low better
Time
0.60
0.55
Intervention
-2.29.
0.84
Symptoms
0.000
0.281
0.32
0.64
-0.49
1.69
-3.94 -0.63.
0.000
Family Quality
15-60
Baseline
0.79
0.06
high better
Time
0.43
0.51
Intervention
2.55.
0.98
Of Life
0.000
-0.58
0.406
0.009
Gail Kieckhefer, PhD, PNP-BS, ARNP
Pediatric Nursing Grand Rounds
February 5, 2009
0.68
0.63
0.90
1.44
4.48
Change across 12 Month
Follow-up
Gail Kieckhefer, PhD, PNP-BS, ARNP
Pediatric Nursing Grand Rounds
February 5, 2009
Gail Kieckhefer, PhD, PNP-BS, ARNP
Pediatric Nursing Grand Rounds
February 5, 2009
Gail Kieckhefer, PhD, PNP-BS, ARNP
Pediatric Nursing Grand Rounds
February 5, 2009
Gail Kieckhefer, PhD, PNP-BS, ARNP
Pediatric Nursing Grand Rounds
February 5, 2009
Gail Kieckhefer, PhD, PNP-BS, ARNP
Pediatric Nursing Grand Rounds
February 5, 2009
Limitations/considerations
•
•
•
•
•
Sample
Only 3 time points
Power
Effect sizes
No dose response
Gail Kieckhefer, PhD, PNP-BS, ARNP
Pediatric Nursing Grand Rounds
February 5, 2009
Implications for Nursing
Practice
• Expect adult oriented programs to need
extensive revision and formal evaluation
• Universally offer parent education
support programs
• Other parents provide unique
contributions
• Expect absences so re-visit topics
Gail Kieckhefer, PhD, PNP-BS, ARNP
Pediatric Nursing Grand Rounds
February 5, 2009
Implications for Nursing
Research
•
•
•
•
•
Other modalities
Other time frames
Diversity
Longer follow-up
Do improved parent outcomes lead
to child outcomes
Gail Kieckhefer, PhD, PNP-BS, ARNP
Pediatric Nursing Grand Rounds
February 5, 2009
Comments
and Questions
Gail Kieckhefer, PhD, PNP-BS, ARNP
Pediatric Nursing Grand Rounds
February 5, 2009