Vision
To build and operate a free-standing, full service
children's respite and end-of-life care house
in Ohio.
The Need for a Pediatric Respite and End-of-Life Care Facility in Cincinnati
The Cincinnati community is fortunate to have a nationally recognized children's hospital, which provides state of the art medical care. Advances in medicine, both in Cincinnati and elsewhere, have saved lives and extended the possibilities for children with complex illness. As a result of these advances, a large group of children with complex health care needs has emerged. Government policies, which emphasize the community as the arena for long-term care, have placed a significant burden on families caring for children with chronic, complex illness. In 2001, a national survey of children with special health care needs showed that 12.8% of children younger than 18 years were estimated to have a chronic physical, developmental or emotional condition. The functional limitations of these children require health related services beyond those of other children. The more seriously disabled children will often require a primary caregiver...usually the mother. The demands of caregiving and the functional limitations of the children set these families apart from their peers. While family caregivers can gain a great deal of satisfaction from their role, in general, they experience poorer health and quality of life than non-caregivers. They often experience emotional overload and negative feelings such as anger, dissatisfaction, guilt, frustration, and family conflict.
Our current health care system commits tremendous resources to rescuing the injured, ill, and disabled, but then consigns such families of children with chronic, complex conditions to custodial care which is primarily provided at home. Services in the community are not sufficiently developed to support these families. We believe it is important to support family caregivers because the health care system for these children is dependent upon them. Respite care is one of the few services that focuses primarily on supporting family caregivers. Research suggests that respite care lessens caregiver stress. Respite care in the form of daycare centers and overnight facilities has been the cornerstone of care for children with chronic, complex conditions in Australia and the United Kingdom. The lack of reimbursement for respite care has limited the development of these services in the United States.
Additionally, children dying of a progressive, life-threatening illness are relegated to either the hospital or home for the provision of end-of-life care. However, the hospital or home may, at some point, no longer be the desired or practical location for all dying children. As in adult care, there is a need for a facility that incorporates a philosophy of care which focuses on enhancing the quality of life for children living with progressive, life-threatening illness.
We would propose a facility which would provide respite for children with chronic, complex conditions staffed by pediatric specialists. Such a facility would also incorporate a small number of family suites to accommodate children and their families needing end-of-life care. This facility would include space for social interaction, education, and psychological support of these children and their families.
This vision is only possible provided individuals and organizations have the courage to step forward and embrace the challenge.
