The Perspective of Families With a Ventilator-Dependent Child at Home. A Literature Review.

This literature review gives an overview about the existing research concerning the experiences of families with a child with ventilation at home. The number of children with home-ventilation is increasing. Children who receive homecare have the possibility of growing up in their familiar environment and participate in social life. In comparison to children living in institutions, children at home show advantages in their physical, psychological, emotional, social and cognitive development. However, homecare of a child with ventilation places high demands on all family members. Parents assume divergent roles and live with losses. Especially mothers feel isolated, partially through self-imposed isolation. While parents are concerned about this dilemma, talk about their anxieties and strive for stability, children focus on other aspects of their life. They see the ventilator as a positive technique that helps them breathe. The children underline the importance of friends and would like to meet them without nurses in attendance. They strive for normalcy and independence like healthy children, asking for acceptance of themselves and their wishes. There are only few studies about the experience of families with a child with ventilator. Most studies are from the mother's perspective. Parents and children ascribe different importance to the ventilation. Further research should usefully explore the experiences of families with children using home-ventilation. The different perspectives of all family members have to be taken into consideration.