Sometimes as parents we might be happy with the technical medical care our child receives but be frustrated by the “missing pieces” or lack of connection/directions to the other resources we need to address our child’s special needs. Increasingly medical professionals recognize that for families whose children have special health care needs, developmental delays or disabilities, care can not just be about tests, procedures and prescriptions but instead must be “Family Centered”. A new graduate level certificate training program at the IUPUI School of Social Work seeks to train professionals such as social workers, nurses and others about family center care. As this project starts they would like the help of families to articulate what family members think would make their experience better.
If you are willing to share a few sentences about your family’s experience you can help this effort. Please consider answering the following:
I wish that when my child was hospitalized someone told me____
An important issue that doctors or other professionals didn’t address for my family was___
If we had been told about _______ earlier it would have changed_____
The most helpful professional to me made a difference by ____
I would describe being “family-centered” to mean _____
Other Ideas or comments I would like to share about family-centered care:
What county you live in.
The age of your child.
Your child’s diagnosis
If you want your name shared or not
Please feel free to share this opportunity for input with other families.
All responses should be sent to:
Rylin Rodgers firstname.lastname@example.org