Being the Parent of a Ventilator-Assisted Child

Abstract

The number of medically fragile children cared for at home is increasing; however, there are few studies about the professional support these families receive in their homes. The aim of the study was to understand the meanings that parents had about the support they received from health care professionals who offered care for their ventilator-assisted child in the family home. A phenomenological-hermeneutic method was used. Data included the narratives of five mother–father couples living in Sweden who were receiving professional support for their ventilator-assisted child. The findings indicate that receiving professional support meant being at risk of and/or exposed to the exercise of control over family privacy. The professional support system in the families’ homes worked more by chance than by competent and sensible planning. In good cases, caring encounters were characterized by a mutual relationship where various occupational groups were embraced as a part of family life. The findings are discussed in light of compassionate care, exercise of power, and the importance of holistic educational programs.