Putting It All Together: Supporting Parents of Children with Special Health Care Needs in Advocacy Karen Tate, Family Consultant Karen M. Hudson, MSW The.

Putting It All Together: Supporting Parents of Children with Special Health Care Needs in

Advocacy

Karen Tate, Family ConsultantKaren 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 knowledgeTo 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

RefreshmentsSpeaker’s FeeParkingCopying of Resource MaterialsCare Coordination Binders

Procedures

Recruiting families to surveyDeveloping the phone scriptCollating the survey resultsDeveloping workshops based on

findingsImplementing 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 StrategiesCommunicating with PhysiciansEducational Issues

Addressing the NeedsPIAT: Education & Support for FamiliesObtaining Out-Patient ServicesHome Dental Care and Dental

Care ResourcesFamily Coping StrategiesMaximizing a Doctor’s VisitNavigating the Educational

SystemCare 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 weatherProject leader’s challenges with

her child’s medical conditionConflict 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: [email protected]

Karen Tate: [email protected]