The "Little" Things

Dr. Mok's Notes - July 2006
I consider myself well-versed in the myriad patient and family services offered here at The Children’s Hospital.  However, I am not surprised when I learn about something new or relatively “undiscovered” being done for patients and families to help make their visits more efficient or personable.  Indeed, you may find the opportunity to make use of these “hidden services” in caring for the patients in your practice. This edition of Mok’s Notes focuses on the “little” things Children's is doing to ensure all of our patients are well cared for. 

CarePages

CarePages is a free, Web-based tool that allows patients and families to stay connected with their extended network of relatives and friends during an acute or chronic illness.  They are able to design a confidential Web page through The Children’s Hospital Web site that allows them to post news, updates and photos about their ill child, exchange messages, and keep a record of the experience for future use.  Some CarePages are used for short periods of time during brief hospital stays, and others remain active for years during the course of chronic illness.  During the past four years, the service has allowed hundreds of patients and families to create CarePages, with hundreds of thousands of interactive hits.

Testimonials from families and friends indicate a high level of satisfaction with CarePages as a way to keep many people informed of a child’s condition without making lots of phone calls.  They have complete control of who is able to read and comment on their own CarePage.  The service was started by a couple who had a child with a congenital heart problem. They found the Internet to be a useful method of communication, and so they formed their company to allow institutions like The Children's Hospital to become partners.  Care Pages is supported by The Family Advisory Council. 

Patient Representatives

This service, offered through the Association of Volunteers at The Children's Hospital, provides a liaison between the patients and their families and the hospital staff.  The Patient Representatives meet families after their arrival to help orient them to The Children's Hospital policies and procedures.  They serve as a resource for families who might have questions or concerns, but they avoid getting involved in specific health issues the patient might have or in giving any medical advice.  Sometimes, families feel they can speak more openly with someone who is not a hospital employee, such as the volunteer patient representatives.

Occasionally, a patient representative might get involved in handling a specific complaint that a patient, family or guardian might have.  These are easily resolved by facilitating communication between the family and staff.  More significant complaints are referred to the Director of Family Services or to The Children's Hospital administration. 

Colors of Healing

The bereavement program at The Children's Hospital – Colors of Healing – offers ongoing information and support to families who have lost a child. Colors of Healing reaches out to families whenever a child dies at The Children's Hospital, and additionally, these services are available to any family in the community needing bereavement services.  The goal of the program is to acknowledge the depth of the family’s loss and to offer help that will ease them into a focused healing process.

At the time of death, the family is given a packet of supportive literature including resource materials and, when possible, a “Precious Print” of their child’s hand or foot.  Later a condolence card is sent along with the offer of two films put together by parents for parents that deal with grief.  In addition, a variety of programs are made available, including: nine week support groups, sibling groups, an annual memorial service, a national speaker conference, photo album workshops, holiday gatherings and a library of grief literature. Efforts are made to introduce families to others who have lost a child as a source of support and understanding and to experience a sense of solidarity in grief.