Gail Kieckhefer, PhD, PNP-BS, ARNPPediatric Nursing Grand Rounds
February 5, 2009
Childhood Chronic Illness: Enhancing Family
Capabilities using the Building on Family
Strengths CurriculumGail M Kieckhefer, PhD, PNP-BS, ARNP
Joanne Montgomery Endowed ProfessorFamily & Child Nursing
Gail Kieckhefer, PhD, PNP-BS, ARNPPediatric 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, ARNPPediatric 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, ARNPPediatric 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, ARNPPediatric Nursing Grand Rounds
February 5, 2009
Need for Parent and Interdisciplinary Team
Co-Investigators Key PersonnelNanci Villareale, nursing Lyn Kratz, social work
Elizabeth Bennett, health education
Virginia Sharp, statistical analysis
Nancy Uding, parent Cristine Trahms, nutritionShervin Churchill, statistical analysis
Megan Sety, public health & social work
Gail Kieckhefer, PhD, PNP-BS, ARNPPediatric 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, ARNPPediatric 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, ARNPPediatric 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, ARNPPediatric 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, ARNPPediatric 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, ARNPPediatric Nursing Grand Rounds
February 5, 2009
Design of the Curriculum
Content• Impact on your Parenting
– Promoting child capabilities through developmentally appropriate shared-management
– Three styles of communication including assertive communication
– Using distraction
Gail Kieckhefer, PhD, PNP-BS, ARNPPediatric 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
decision-making within the family & medical home
• listening; observing; positive communication• advocacy• conflict management
Gail Kieckhefer, PhD, PNP-BS, ARNPPediatric 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, ARNPPediatric Nursing Grand Rounds
February 5, 2009
Design of the CurriculumProcesses
• 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, ARNPPediatric 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, ARNPPediatric Nursing Grand Rounds
February 5, 2009
Parent Education Greater parental self-efficacy
Parent and child demographic and
condition characteristics
Greater parent-child shared management
Greater family quality of life
Increased parent coping
Better emotional health
Gail Kieckhefer, PhD, PNP-BS, ARNPPediatric Nursing Grand Rounds
February 5, 2009
RandomizedN=129
Treatment at BaselineN=83
Control at BaselineN=46
Data not included in analysis1
N=14
Did not return 6 month survey
N=2
Withdrew before classes began and did not provide any
follow-upN=1
ExcludedN=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)
Not screened N=27
(Not interested after hearing initial description; not
reachable after their initial contact)
Total initial contacts from potential participants
N=233
Assessed for eligibilityN=207
Did not return 6 month survey
N=7
Data not included in analysis1
N=5
Final Treatment Analyzed
N=61Final Control
Analyzed
N=39
Gail Kieckhefer, PhD, PNP-BS, ARNPPediatric Nursing Grand Rounds
February 5, 2009
Parents92% female73% married82% > 12 grade90% non-Hispanic
Sample
Gail Kieckhefer, PhD, PNP-BS, ARNPPediatric 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, ARNPPediatric Nursing Grand Rounds
February 5, 2009
Baseline BFS Baseline Self Efficacy Scores (n=123)
0%4%
44%39%
13%
0%
10%
20%
30%
40%
50%
0 2 3 4 5
→ More Self Efficacy →
Gail Kieckhefer, PhD, PNP-BS, ARNPPediatric Nursing Grand Rounds
February 5, 2009
BaselineBFS Baseline Shared Management Scores (n=127)
8%
15%
34% 34%
9%
0%5%
10%15%20%25%30%35%40%
1 2 3 4 5
→ More Shared Management →
Gail Kieckhefer, PhD, PNP-BS, ARNPPediatric Nursing Grand Rounds
February 5, 2009
BaselineBFS F-COPES Score at Baseline (n=128)
2%
9%
20%
25%27%
13%
4%
0%
5%
10%
15%
20%
25%
30%
60-69 70-79 80-89 90-99 100-109 110-119 120-130
→ Better Coping →
Gail Kieckhefer, PhD, PNP-BS, ARNPPediatric Nursing Grand Rounds
February 5, 2009
BaselineBaseline Distribution of Depression Scores (CESD-10), n=129
0
2
4
6
8
10
12
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
<10 10-1415-30
Gail Kieckhefer, PhD, PNP-BS, ARNPPediatric Nursing Grand Rounds
February 5, 2009
BaselineBFS Baseline Quality of Life Score
22%
37%
30%
11%
0%
5%
10%
15%
20%
25%
30%
35%
40%
20-29 30-39 40-49 50-60
→ Better Quality of Life →
Gail Kieckhefer, PhD, PNP-BS, ARNPPediatric Nursing Grand Rounds
February 5, 2009
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, ARNPPediatric Nursing Grand Rounds
February 5, 2009
Baseline mean scoreMean score 6 months
laterAverage Score diff. after 6
monthsP-value 2-tailed paired
ttest, within group
Scale Treatment Control Treatment Control Treatment Control Treatment Control
Self Efficacy ↑ better 3.6 3.6 3.9 3.5 0.292 0.03 0.002 0.76(1-5)
Shared Management↑ better 3.2 3.2 3.5 3.2 0.30 0.06 0.002 0.54(1-5)
CESD10↓ better 11.9 11.7 9.7 12.3 -2.21 0.36 0.010 0.70(0-30)
Cope↑ better 96.4 96.5 103.1 95.1 6.36 -1.54 <0.001 0.34(29-145)
Quality of Life↑ better 36.1 38.9 39.5 39.6 3.19 -0.14 <0.001 0.86
(15-60)
Paired sample N=110, Treatment n=69, Control n=41
Gail Kieckhefer, PhD, PNP-BS, ARNPPediatric Nursing Grand Rounds
February 5, 2009
2-tailed, between groups
Effect size for treatment group
p-value All Worst quartile
SELF-EFFICACY 0.049 7.7% 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, ARNPPediatric Nursing Grand Rounds
February 5, 2009
Change by 6 Month Follow-up
1.0
1.5
2.0
2.5
3.0
3.5
4.0
Baseline 6 month
Self Efficacy
1.0
1.5
2.0
2.5
3.0
3.5
4.0
Baseline 6 month
Shared Management
Gail Kieckhefer, PhD, PNP-BS, ARNPPediatric Nursing Grand Rounds
February 5, 2009
0
5
10
15
20
25
Baseline 6 month
Depressive Symptoms
60
70
80
90
100
110
120
130
Baseline 6 month
Coping
Gail Kieckhefer, PhD, PNP-BS, ARNPPediatric Nursing Grand Rounds
February 5, 2009
Quality of Life
10
20
30
40
50
60
Baseline 6 month
Gail Kieckhefer, PhD, PNP-BS, ARNPPediatric Nursing Grand Rounds
February 5, 2009
Change across 12 Month Follow-up
Measure Scale Factor Coef. Std Err. P-value 95% CI
Self-Efficacy 1-5
high better
Baseline
Time
Intervention
0.52
0.04
0.37
0.09
004.
0.10
0.000
0.394
0.000
0.33 0.07
-0.05 0.12
0.17 0.55
Shared-Management 1-5
high better
Baseline
Time
Intervention
0.76
0.01
0.11
0.05
0.05
0.11
0.000
0.870
0.000
0.65 0.85
-0.09 0.11
0.17 0.56
Coping 29-149
high better
Baseline
Time
Intervention
0.72
0.74
6.90.
0.06
1.02
1.69
0.000
0.467
0.000
0.60 0.84
-1.26 2.75
3.58 10.22
Depressive
Symptoms
0-30
low better
Baseline
Time
Intervention
0.48
0.60
-2.29.
0.08
0.55
0.84
0.000
0.281
0.000
0.32 0.64
-0.49 1.69
-3.94 -0.63.
Family Quality
Of Life
15-60
high better
Baseline
Time
Intervention
0.79
0.43
2.55.
0.06
0.51
0.98
0.000
0.406
0.009
0.68 0.90
-0.58 1.44
0.63 4.48
Gail Kieckhefer, PhD, PNP-BS, ARNPPediatric Nursing Grand Rounds
February 5, 2009
Change across 12 Month Follow-up
Gail Kieckhefer, PhD, PNP-BS, ARNPPediatric Nursing Grand Rounds
February 5, 2009
Gail Kieckhefer, PhD, PNP-BS, ARNPPediatric Nursing Grand Rounds
February 5, 2009
Gail Kieckhefer, PhD, PNP-BS, ARNPPediatric Nursing Grand Rounds
February 5, 2009
Gail Kieckhefer, PhD, PNP-BS, ARNPPediatric Nursing Grand Rounds
February 5, 2009
Gail Kieckhefer, PhD, PNP-BS, ARNPPediatric Nursing Grand Rounds
February 5, 2009
Limitations/considerations
• Sample• Only 3 time points• Power• Effect sizes• No dose response
Gail Kieckhefer, PhD, PNP-BS, ARNPPediatric 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, ARNPPediatric 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, ARNPPediatric Nursing Grand Rounds
February 5, 2009
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