Putting It All Together: Supporting Parents of Children with Special Health Care Needs in Advocacy Karen Tate, Family Consultant Karen M. Hudson, MSW The Children’s Hospital of Philadelphia With support from The Philadelphia Department of Public Health Division of Maternal, Child and Family Health

Overview Parents and caregivers are given a great deal of support during the course of hospitalization We know there are many stresses routinely associated with the transition from the hospital to home

Overview Success of a child’s care post discharge is contingent upon a parent/caregiver’s competence with this new challenge Identifying the needs of parents/caregivers will contribute to this success

Background of Project Success of a former project “So Now You’re Home” serves as the basis for this project “Putting it All Together” ( PIAT )sought to understand the needs of families  Discharged and home for at least 4 months after an inpatient stay of at least 1 week

Project Goals Identify the family needs for a successful transition to home Identify the challenges faced by families once home Identify the successes of discharge planning To identify gaps in knowledge To increase their knowledge and competence in care post discharge

Resources Community Education Program Coordinator LEND ( Leadership Education in Neurodevelopmental and related Disabilities) Fellows/Trainees ** The LEND Program is supported by Project #33463 of the Maternal Child Health Bureau, (Title V, Social Security Act), Health Resources and Services Administration, United States Department of Health & Human Services **

Budget $1200 Refreshments Speaker’s Fee Parking Copying of Resource Materials Care Coordination Binders

Procedures Recruiting families to survey Developing the phone script Collating the survey results Developing workshops based on findings Implementing workshops

Getting Started Attempted to survey 75 families, received feedback from approx. 25 families  How long has it been since your child went home from the hospital?  What has been the most challenging since returning home?  Are there things that made your transition to home difficult?  How has the change in your child’s condition affected your family? ( siblings, spousal relationship, extended family, parenting ability )

More Questions Has it been difficult getting your child to comply with discharge recommendations? Have there been obstacles in obtaining therapy services once home? Has your child returned to previous activities? Have you faced any problems with respect to schooling? Any other thoughts?

Themes of Phone Survey How to obtain out-patient services Obtaining dental care for children with special healthcare needs Coping Strategies Communicating with Physicians Educational Issues

Addressing the Needs PIAT: Education & Support for Families Obtaining Out-Patient Services Home Dental Care and Dental Care Resources Family Coping Strategies Maximizing a Doctor’s Visit Navigating the Educational System Care Coordination Binders

Oral Healthcare for the Child with Special Needs

Challenges and tips: Delivering hygiene routines at home  Difficulties opening mouth and maintaining an open mouth during cleaning  Being bitten during brushing and/or flossing  Mouth prop use during tooth brushing and flossing  Best position for the care giver

Challenges Lack of complete buy-in of LEND participants Difficulty contacting the families led to decreased numbers of invited Inclimate winter weather Project leader’s challenges with her child’s medical condition Conflict with another event impacted attendance

Lessons Learned Excitement and buy-in of staff necessary for success Team with other Family programs Develop a written template for planning workshops Check calendar for conflicting local events

Next Steps Survey family participants for increased competence and self-efficacy Support hospital-wide Care Coordination initiative with the development of a binder for families of children with special healthcare needs

Thank you! Karen Hudson: Karen Tate: