Intricacies of managing home ventilation: A hospital based program

Abstract

Introduction: Paediatric home ventilation has escalated rapidly over the past decade; resulting in the need for a more structured program to meet the needs of these children and families at home. The Paediatric Home Ventilation program at our centre has recently undergone a major restructure. The aim of this study is to describe the intricacies of management within the current program, which cares for 14 children dependent on long-term ventilation and their associated complex needs. Aims: (a) To determine if care requirements were regularly met for families, and describe any adverse events occurring in the home environment. (b) To review scheduled and unscheduled hospital visits with the aim of determining if a more efficient care coordination is possible for families using the new program. Methods: A retrospective review of the12-month period following establishment of the new program. Data was obtained from the locally held electronic database. Results: For the 14 patients on the program an average of 4,987 hr of care support is required per month to meet their medically recommended requirements (1,247/week). With the new system (coordinated by nurse manager/admin staff) provision of care was achieved for >95% of shifts; this was predominantly overnight care support plus daytime and school shifts for specific patients (medically assessed). Reasons for failure of support worker provision included family refusal, support worker sickness. Over the 12 months 1 major and 9 minor adverse events were recorded with no overall negative outcomes. Events were reviewed by the specialist nurse to prevent further problems arising. Hospital visit data demonstrated a reduction in the number of scheduled visits with improved coordination of specialists involved; and a decreased in unscheduled visits through nurse led home visits. Discussion: Through the development of a new program it has been possible to establish a successful system for improved family support, procedures for promptly evaluating and resolving adverse events occurring in the home, as well as reducing the burden of hospital visits for these complex patients. This model may be of interest to other centres that care for complex patients who require home long-term ventilation.L6246119082018-11-01 <br />