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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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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
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 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 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
Design of the CurriculumContent • Emotional Dimensions of parenting a child with chronic illness • Exploring feelings • Managing hard feelings • Self-talk February 5, 2009
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
Design of the CurriculumContent • Impact on Relationships and Family Communication • Strained relationships and communications • Self-massage • Effective communication and listening skills February 5, 2009
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
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
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
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
Sample Parents 92% female 73% married 82% > 12 grade 90% non-Hispanic 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 February 5, 2009
Baseline February 5, 2009
Baseline February 5, 2009
Baseline February 5, 2009
Baseline 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
Change by 6 Month Follow-up February 5, 2009
Change across 12 Month Follow-up February 5, 2009
Change across 12 Month Follow-up February 5, 2009
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 February 5, 2009
