Back to Annual Meeting Page		American Public Health Association 133rd Annual Meeting & Exposition December 10-14, 2005 Philadelphia, PA

Abstract #121040

Rashida R. Dorsey, MPH, Center of Injury Research and Control, University of Pittsburgh, 200 Lothrop St, UPMC Presbyterian, Suite B400, Pittsburgh, PA 15213, 412-624-6820, rrd3+@pitt.edu, Yvonne Van Haitsma, Bayer Center for Nonprofit Management at Robert Morris University, 718 Fifth Ave, Pittsburgh, PA 15219, Meghan ODonnell, Pediatric Palliative Care Coalition Co-Founder, 34 Crossover Lane, Cannonsburgh, PA 15317, and Kerry ODonnell, Maurice Falk Foundation, 3315 Grant Building, Pittsburgh, PA 15219.

Thousands of children are newly diagnosed with a terminal illness annually. These conditions devastate families and immerse them in a world full of medical professionals, frequent and lengthy hospitalizations along with a multitude of tests, therapies, and medicines. Families struggle to navigate through the health care system to identify and pay for necessary services. Pediatric Palliative Care refers to care for children with life-limiting illnesses using a system of comprehensive and interdisciplinary services, such as pain management, respite and hospice care, as well as psychological, social and spiritual support. Presently, palliative care is difficult to obtain; services are often not disclosed and are not always covered by insurance plans. The Pittsburgh Pediatric Palliative Care Coalition conducted the first needs assessment to identify services currently provided, the needs of families and feasibility of palliative care delivery options for children with life-limiting illnesses in Western Pennsylvania. A mail survey was completed by 227 families with medically fragile children. Minorities were less likely to report respite care, compared to whites (p=.05). Sixty percent reported needing more respite care than they received. Barriers to respite included cost, lack of services, and not knowing the availability of services. Families also reported the need for more comprehensive case management and grief support. Families using Medicaid were less likely to receive grief support after the death of a child (p.>05). These findings will be used to help families identify existing resources and to develop needed support services for disease management of terminally ill children.

Learning Objectives:

• Describe the necessary methodology to conduct a palliative care needs assessment
• Organize a coalition centered on pediatric palliative care
• Create a resource map of services available for terminally ill children
• Identify needs of families with terminally ill children

Keywords: Access and Services, Children's Health

Presenting author's disclosure statement:

I wish to disclose that I have NO financial interests or other relationship with the manufactures of commercial products, suppliers of commercial services or commercial supporters.