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