Care of Technology Dependent Infants and Children in the Home: A Training Program for Nurses
Infants and children with medically complex conditions require life-sustaining technological support in order to be cared for at home and to avoid long-term hospitalization. But competent pediatric nursing care is required in the home to manage high skill level care and to provide supervision that is needed. A critical shortage of experienced home care nurses has forced parents and families of these children to increasingly bear the burden of nursing care for extended periods of time. These affected parents often suffer from sleep deprivation and exhaustion, loss of job hours, abandoned careers, and a profound sense of hopelessness.
The Pennsylvania Ventilator Assisted Children’s Home Program (VACHP) is a Pennsylvania Department of Health program that assists children and families with the management of care at home. The organization indicates the shortage has had an increasing negative impact on children and families. In 2001, in order to address this problem and the need for nurses, the PA AHEC in collaboration with the VACHP initiated a nurse training program for 300 nurses who attended a one day satellite program in two cities, Pittsburgh and Philadelphia.
Based on the positive response to this program, a more intense four day program was developed for small groups of up to 24 nurses. These training sessions have been offered since 2001 on the average of twice annually to a total of 200 nurses from a variety of clinical backgrounds. The intensive “boot camp” provides theory, hands-on training and skill testing to prepare nurses with the clinical and equally important psychosocial skills needed to provide care autonomously to ventilator-dependent children in their homes and support for their families. This program is the only such training program in the country and was recently assigned 24 continuing education credits by the Pennsylvania State Nurses Association.
Deborah Boroughs, RN, MSN, is the Administrator of VACHP. With a technology dependent child of her own, she has experienced first hand the shortage and the deterioration of the quality of nurses with ventilator training or critical care experience. She says that “after you have all the services provided by the hospital, going home is like jumping off a cliff since you have nothing.” She feels passionately that qualified nursing care, as well as the social services that VACHP provides, are not a luxury but a necessity for the child and for the family. Higher death rates, hospitalization rates and divorce rates resulting from lack of adequate support create burnout. “We know how parents feel about us when we do our job right.”
In these last five years the SE PA AHEC was able to support these training programs through funding and grants from the Pennsylvania Department of Health and the Christopher Reeve Foundation (CRF) Quality of Life program.