This section provides snapshots of the many ways in which agencies deliver services to their pediatric patients. Through the sharing of innovative information home health and hospice providers can develop new or expand their existing pediatric programs. Look for information on how your agency can be in the Peds@Home spotlight!
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A terminally ill child is just that, a child. Terminally ill children still want to play and laugh. They want to be at home with their family. They want to make the most of every moment. While the terminal illiness often makes these things more difficult, it also makes them even more essential.
StarShine, was born out of a need expressed by the parents of children facing a terminal prognosis who had been cared for in our Home Health Care program. They had formed a bond and trust with our Home Care Staff and wanted to remain within our care. In April of 1996, StarShine Hospice began providing care and services for patients and families in our community. StarShine is predominately a home based program providing nursing care, symptom management, psychosocial support, spirtual care and bereavement services. StarShine also extends support to schools and the community in time of need.
Our primary goal is to maximize comfort and quality of life for the terminally ill child by providing age appropriate care and support. This is made possible by drawing upon the pediatric expertise and resources available through Children's Hospital Medical Center. Providing staff education within the Medical Center and the community at large regarding the pediatric hospice philosophy is another important goal. This is very often a great challenge, since the thought of a child dying is difficult to accept, Little is known how the loss of a child affects parents and siblings. It is our desire to develop a focused, hypothesis-driven research program. Tools need to be developed and validated to identify bereavement problems and how best to help individuals through the grief process.
Hospice care for children incorporates both a concept for caring and a system of comprehensive, interdisciplinary services. Team conferences are held on a weekly basis to discuss the status, needs and desires of each patient/family and plan the care for the coming week. Twenty-four hour care and support is available through StarShine's nursing on-call program. The nursing staff is a mix of part time and full time employees. The majority of nurses have been cross trained from the Home Care program to Hospice. This has been found to assist in staff retention. Social work and chaplaincy are also core team members. Our resource staff include a child life specialist, nutritionist, pharmacist, OT/PT/ST, and massage therapist.
The StarShine Volunteers have proven to be a valuable resource. Two levels of volunteer work exists, patient care volunteers and fund raising volunteers. The StarShine patient care volunteers have benn specially selected and trained to work with the terminally ill child and their siblings. They provide diversional activities and assist in our funeral support program. The fund raising volunteers are men and women in the community who have stepped forward to help plan, market and participate in our fund raising events and programs. We have created an endowment to allow StarShine to carry on its mission for many years to come.
In its first two years, StarShine has met many of its initial goals and is now setting new goals to expand services in the coming year and beyond. StarShine will develop a consulting service for inpatients within the Medical Center and area community hospitals. StarShine will continue to address the educational needs of health care professionals, insurance carriers, state and federal agencies, and the local community. It is our desire to assist with the development of nationwide pediatric hospice resource network to provide support to new programs in the development stage and to promote sharing of information and resources.