Both CHRMC and SCCA will provide you with written materials (print and electronic) about, and orientation to, their services and facilities. Parents and caregivers play a vital role during a child’s BMT, serving as essential members of the BMT team. Today most children’s hospitals in the US strive to offer family-centered care, which considers the important of the needs of child and family and values their participation as members of the care team.
During each phase of the BMT, parents and caregivers have essential roles. The BMT process is considered to have three phases:
- pre-transplant work-up and preparation, often in an outpatient clinic
- transplant and immediate recovery in the hospital
- long-term recovery with close outpatient follow-up
At each phase parents not only provide emotional support to their child, but also become responsible for monitoring his/her condition, administering medications, preparing the child for tests and procedures, diet and nutrition, maintaining safety and hygiene precautions, and more. Classes and individual instruction are given to teach these special skills to all those who will care for the patient. There are also regular support groups for BMT parents at CHRMC and SCCA during both the inpatient and outpatient phases.
There are also now a number of excellent resources, including organizations and virtual communities, available for parents whose children are hospitalized as well as those which are specific to BMT. Many of these were created by patients and patient families to fill the unmet needs they themselves had encountered during the BMT process. Some resources that many families have recommended are:
Aydando a Tu Hijo en el Hospital (Spanish version)
These books by Nancy Keene are among many useful titles published by Patient Centered Guides.
The Child Life Council’s Resource Library contains extensive bibliographies, as well as original materials for children, families, and healthcare providers on a wide range of topics on the hospital expereince, medical procedures, tests, diseases, and more.
You may find the following BMT-specifc materials to be very helpful:
SCCA Pediatric BMT Program website: The Transplant Process
Note: Families will be given a copy of SCCA’s Preparing for Transplant handbook with more program-specific detailed information at their child’s first visit.
NMDP: When Your Child Needs a Transplant
covers various special topics and offers materials including:
Preparing for your Child’s Transplant
Helping Your Child Cope with Hospitalization
Child’s Guide to Transplant — DVD and workbook