1. Gail Kieckhefer, PhD, PNP-BS, ARNP Pediatric 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, ARNP Joanne Montgomery Endowed Professor Family & Child Nursing

2. 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

3. 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

4. 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

5. Gail Kieckhefer, PhD, PNP-BS, ARNP Pediatric Nursing Grand Rounds February 5, 2009 Need for Parent and Interdisciplinary Team Co-InvestigatorsKey Personnel Nanci Villareale, nursingLyn Kratz, social work Elizabeth Bennett, health educationVirginia Sharp, statistical analysis Nancy Uding, parentCristine Trahms, nutrition Shervin Churchill, statistical analysis Megan Sety, public health & social work

6. 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

7. 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

8. 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

9. 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

10. 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

11. 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 shared- management –Three styles of communication including assertive communication –Using distraction

12. 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 decision- making within the family & medical home listening; observing; positive communication advocacy conflict management

13. 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

14. 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

15. 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

16. Gail Kieckhefer, PhD, PNP-BS, ARNP Pediatric Nursing Grand Rounds February 5, 2009

17. Gail Kieckhefer, PhD, PNP-BS, ARNP Pediatric Nursing Grand Rounds February 5, 2009

18. Gail Kieckhefer, PhD, PNP-BS, ARNP Pediatric Nursing Grand Rounds February 5, 2009 Parents 92% female 73% married 82% > 12 grade 90% non-Hispanic Sample

19. 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

20. Gail Kieckhefer, PhD, PNP-BS, ARNP Pediatric Nursing Grand Rounds February 5, 2009 Baseline

21. Gail Kieckhefer, PhD, PNP-BS, ARNP Pediatric Nursing Grand Rounds February 5, 2009 Baseline

22. Gail Kieckhefer, PhD, PNP-BS, ARNP Pediatric Nursing Grand Rounds February 5, 2009 Baseline

23. Gail Kieckhefer, PhD, PNP-BS, ARNP Pediatric Nursing Grand Rounds February 5, 2009 Baseline

24. Gail Kieckhefer, PhD, PNP-BS, ARNP Pediatric Nursing Grand Rounds February 5, 2009 Baseline

25. Gail Kieckhefer, PhD, PNP-BS, ARNP Pediatric 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

26. Gail Kieckhefer, PhD, PNP-BS, ARNP Pediatric Nursing Grand Rounds February 5, 2009 Baseline mean score Mean score 6 months later Average Score diff. after 6 months P-value 2-tailed paired ttest, within group ScaleTreatmentControlTreatmentControlTreatmentControl TreatmentControl Self Efficacy ↑ better3.6 3.93.50.2920.03 0.0020.76 (1-5) Shared Management ↑ better3.2 3.53.20.300.06 0.0020.54 (1-5) CESD10 ↓ better11.911.79.712.3-2.210.36 0.0100.70 (0-30) Cope ↑ better96.496.5103.195.16.36-1.54 <0.0010.34 (29-145) Quality of Life ↑ better36.138.939.539.63.19-0.14 <0.0010.86 (15-60) Paired sample N=110, Treatment n=69, Control n=41

27. Gail Kieckhefer, PhD, PNP-BS, ARNP Pediatric Nursing Grand Rounds February 5, 2009 2-tailed, between groups Effect size for treatment group p-valueAllWorst quartile SELF-EFFICACY0.0497.7%22.2% SHARED MANAGEMENT0.09711.1%32.0% CESD100.04618.5%40.8% COPE0.0016.6%12.1% QUALITY OF LIFE0.0108.6%21.7%

28. Gail Kieckhefer, PhD, PNP-BS, ARNP Pediatric Nursing Grand Rounds February 5, 2009 Change by 6 Month Follow-up

29. Gail Kieckhefer, PhD, PNP-BS, ARNP Pediatric Nursing Grand Rounds February 5, 2009

30. Gail Kieckhefer, PhD, PNP-BS, ARNP Pediatric Nursing Grand Rounds February 5, 2009

31. Gail Kieckhefer, PhD, PNP-BS, ARNP Pediatric Nursing Grand Rounds February 5, 2009 Change across 12 Month Follow-up MeasureScaleFactorCoef.Std Err.P-value95% 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 0.11 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

32. Gail Kieckhefer, PhD, PNP-BS, ARNP Pediatric Nursing Grand Rounds February 5, 2009 Change across 12 Month Follow-up

33. Gail Kieckhefer, PhD, PNP-BS, ARNP Pediatric Nursing Grand Rounds February 5, 2009

34. Gail Kieckhefer, PhD, PNP-BS, ARNP Pediatric Nursing Grand Rounds February 5, 2009

35. Gail Kieckhefer, PhD, PNP-BS, ARNP Pediatric Nursing Grand Rounds February 5, 2009

36. Gail Kieckhefer, PhD, PNP-BS, ARNP Pediatric Nursing Grand Rounds February 5, 2009

37. 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

38. 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

39. 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

40. Gail Kieckhefer, PhD, PNP-BS, ARNP Pediatric Nursing Grand Rounds February 5, 2009 Comments and Questions