At the edge of vulnerability—lived experience of parents of children with cerebral palsy going through surgery

Abstract

This study explored the experiences of parents of children with cerebral palsy undergoing surgery as they describe them from a lived experience perspective. When children undergo surgical procedures, they have to stay at hospital for a long time, which represents a great challenge for the children as well as their parents. We collected data by using open-ended interviews with 12 parents of 9 children and analyzed these data in accordance with Max van Manen's methodological themes. Based on the parents' stories, the essential theme is: At the edge of vulnerability-being parents at hospital to a child with CP undergoing surgery, which consisted of three subthemes: establishing trust, awareness of a child who cannot speak, and sensing bodily reactions. Parents experienced demanding challenges as they entered the hospital, in a situation that meant both familiarity and unfamiliarity. Judgments about how to care for the child relied on what they normally did. Sitting bedside for hours and days, thoughts about the legitimacy of letting their child go through the suffering surgery were tormenting the parents. They felt vulnerable and very much dependent on health care workers' competence and at the same time doubting them in seeing and taking care of their child's specific needs. It was experienced as an ambivalent situation, and even more so for the parents of a child without speech. The findings indicate that establishing trust implies being met at an existential level and a deeply felt need for health care workers that are really engaged in taking care of their child and their parents.