The impact of home based ventilator dependence on family life

Abstract

Those who experience spinal trauma above the level of C4 require continued ventilation to keep them alive. Over the past 15 years considerable expertise has been developed in not only successfully treating these patients, but also returning them to their home environment with full ventilator support. Little objective evidence is available concerning the views of those who receive permanent ventilation and whether they or their relatives consider it would have been better to allow them to die. The present investigation examined the perceived value of returning home whilst still requiring ventilation, from the point of view of both the injured persons themselves and their nearest relatives. Objective analyses were made using the Family Environment Scale (Moos 1986)1 and a measure of affective state2 of the interaction patterns within each of the families. Although there was some alteration in affective state experienced in most families, the most important factors associated with adaptation appear to be the level of communication within the family and the degree of commitment between all family members. © 1993 International Medical Society of Paraplegia.