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

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. Purpose of grant (HS013384) Need Program Parent and interdisciplinary team

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

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  1. 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 February 5, 2009

  2. 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

  3. Purpose of Grant • Design & test outcomes • Parent education & support curriculum • Randomized clinical trial • Disseminate results February 5, 2009

  4. 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

  5. Need for Parent and Interdisciplinary Team February 5, 2009

  6. Approaches to Enhance Health Related Outcomes • Knowledge & Skills • Beliefs and behavior change • Practice • Support • Other parents • Experienced providers February 5, 2009

  7. Design of the CurriculumContent • 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

  8. Design of the CurriculumContent • Emotional Dimensions of parenting a child with chronic illness • Exploring feelings • Managing hard feelings • Self-talk February 5, 2009

  9. Design of the CurriculumContent • 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

  10. Design of the CurriculumContent • Impact on Relationships and Family Communication • Strained relationships and communications • Self-massage • Effective communication and listening skills February 5, 2009

  11. Design of the CurriculumContent • Impact on your Parenting • Promoting child capabilities through developmentally appropriate shared-management • Three styles of communication including assertive communication • Using distraction February 5, 2009

  12. Design of the CurriculumContent • 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

  13. Design of the CurriculumContent • 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

  14. 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

  15. 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

  16. February 5, 2009

  17. February 5, 2009

  18. Sample Parents 92% female 73% married 82% > 12 grade 90% non-Hispanic February 5, 2009

  19. Sample • Child Characteristics • 43% female • 84% mod to severe severity • 62% impacts child’s ability usually or always February 5, 2009

  20. Baseline February 5, 2009

  21. Baseline February 5, 2009

  22. Baseline February 5, 2009

  23. Baseline February 5, 2009

  24. Baseline February 5, 2009

  25. 6 Month Analysis • Did scores rise in intervention parents • Did scores differ between intervention and control families at 6 months February 5, 2009

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  27. February 5, 2009

  28. Change by 6 Month Follow-up February 5, 2009

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  30. February 5, 2009

  31. Change across 12 Month Follow-up February 5, 2009

  32. Change across 12 Month Follow-up February 5, 2009

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  37. Limitations/considerations • Sample • Only 3 time points • Power • Effect sizes • No dose response February 5, 2009

  38. 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

  39. Implications for Nursing Research • Other modalities • Other time frames • Diversity • Longer follow-up • Do improved parent outcomes lead to child outcomes February 5, 2009

  40. Comments and Questions February 5, 2009

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