Gail Kieckhefer, PhD, PNP-BS, ARNP Pediatric Nursing Grand Rounds February 5, 2009 Childhood Chronic Illness: Enhancing Family Capabilities using the Building

Gail Kieckhefer, PhD, PNP-BS, ARNPPediatric Nursing Grand Rounds

February 5, 2009

Childhood Chronic Illness: Enhancing Family

Capabilities using the Building on Family

Strengths Curriculum

Gail M Kieckhefer, PhD, PNP-BS, ARNPJoanne Montgomery Endowed Professor

Family & Child Nursing


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


February 5, 2009

Purpose of Grant

• Design & test outcomes• Parent education & support

curriculum• Randomized clinical trial• Disseminate results


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


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


February 5, 2009

Approaches to Enhance Health Related

Outcomes• Knowledge & Skills

– Beliefs and behavior change– Practice

• Support– Other parents– Experienced providers


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


February 5, 2009


Content• Emotional Dimensions of parenting

a child with chronic illness– Exploring feelings– Managing hard feelings– Self-talk


February 5, 2009


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


February 5, 2009


Content• Impact on Relationships and

Family Communication– Strained relationships and

communications– Self-massage– Effective communication and listening

skills


February 5, 2009


Content• Impact on your Parenting

– Promoting child capabilities through developmentally appropriate shared-management

– Three styles of communication including assertive communication

– Using distraction


February 5, 2009


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


February 5, 2009


Content• Transitions and Finding Meaning

and Facing the Future– Transition Timeline– The Family Plan– Finding meaning in your experience– Transitioning out of the class


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


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


February 5, 2009

Parent EducationGreater 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


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=61

Final Control Analyzed

N=39


February 5, 2009

Parents92% female73% married82% > 12 grade90% non-Hispanic

Sample


February 5, 2009

Sample

• Child Characteristics– 43% female– 84% mod to severe severity– 62% impacts child’s ability usually or

always


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 →


February 5, 2009

Baseline

BFS 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 →


February 5, 2009

Baseline

BFS 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 →


February 5, 2009

Baseline

Baseline 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


February 5, 2009

Baseline

BFS 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 →


February 5, 2009

6 Month Analysis

• Did scores rise in intervention parents

• Did scores differ between intervention and control families at 6 months


February 5, 2009

Baseline mean scoreMean score 6 months

laterAverage Score diff. after 6

months

P-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


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%


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


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


February 5, 2009

Quality of Life

10

20

30

40

50

60

Baseline 6 month


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


February 5, 2009

Change across 12 Month Follow-up


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Limitations/considerations

• Sample• Only 3 time points• Power• Effect sizes• No dose response


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


February 5, 2009

Implications for Nursing Research

• Other modalities• Other time frames• Diversity• Longer follow-up• Do improved parent outcomes

lead to child outcomes


February 5, 2009

Comments and Questions

Documents

Gail Kieckhefer, PhD, PNP-BS, ARNP Pediatric Nursing Grand Rounds February 5, 2009 Childhood Chronic Illness: Enhancing Family Capabilities using the Building