Bridge to Independence
Grantee: Children's Hospital of Wisconsin
Principal Investigator: John B. Gordon
Project Number: R40MC08960
Project Date: 2/1/2008
Final Report
Bridge to Independence Final Report (PDF)
Age group(s)
- Perinatal/Infancy (0-12 months)
- Toddlerhood (13-35 months)
- Early Childhood (3-5 years)
- Middle Childhood (6-11 years)
- Young Adulthood (19-25 years)
Abstract
The Children's Hospital of Wisconsin / Medical College of Wisconsin Special Needs Program (SNP) is dedicated to improving access to and coordination of care for medically complex and fragile children and youth with special health care needs (CYSHCN). Bridge to Independence seeks to determine whether adding systematic competency-based care coordination education for families and patient-specific care coordination tools for PCPs to our nationally recognized care coordination program will empower the families and PCPs to better ensure sustained medical and non-medical care coordination for this population. Specific Aim 1: Develop, implement, and evaluate a systematic, competency-based care coordination education curriculum for families of medically complex and fragile CYSHCN. Specific Aim 2: Develop, implement, and evaluate patient-specific care coordination tools for PCPs of medically complex and fragile CYSHCN. Specific Aim 3: Evaluate sustainability of this Tertiary Center / Family / Primary Care Partnership and develop and disseminate materials needed to enhance its replicability. Bridge to Independence touches on all MCHB Strategic Plan and Strategic Research Issues. Issue 1 is addressed by investigating a model of care coordination that may increase capacity and improve health infrastructure and systems for MCH populations. Issue 2 is addressed by studying a model that improves services for CYSHCN who are frequently developmentally delayed and/or members of underserved inner-city minority or rural populations. Issue 3 is addressed by studying the impact of a specific enhancement to a successful model with potential to improve quality of care and increase capacity. Issue 4 is addressed by testing a model of coordinated strategies between clinical, community, and home environment to enhance family / professional partnerships. The new care coordination education will be developed using standard curriculum design methods. Multiple teaching formats will be created and its impact compared with current ad hoc education by measuring family satisfaction, quality of life, and autonomy (through self-assessed comfort and competency surveys, SNP use, and length of time to complete care coordination tasks). PCP Tools will be developed and evaluated through a combination of content expert and PCP user input. Their impact will be assessed by comparing autonomy in PCPs receiving current ad hoc communication and those receiving the new Tools. Sustainability and replicability of this new Tertiary Center / Family / PCP Partnership model will be further evaluated by comparing family and PCP satisfaction with SNP services, child health maintenance and access to care, and SNP return on investment and capacity for the Control and Intervention Groups. Thus, Bridge to Independence will address barriers to care coordination and Medical Homes, fill gaps in the literature, and provide groundwork for future multi-center studies designed to identify best practices in care coordination of medically complex and fragile CYSHCN.Publications
Listed is descending order by year published.
Johaningsmeir SA, Colby H, Krauthoefer M, et al. Impact of caring for children with medical complexity and high resource use on family quality of life. J Pediatr Rehabil Med. 2015;8(2):75-82.
Conceição SCO, Johaningsmeir S, Colby H, Gordon J. Family caregivers as lay trainers: perceptions of learning and the relationship between life experience and learning. Adult Learning. 2014;25(4):151-159.
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