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.

When children with profound multiple disabilities are hospitalized: A cross‐sectional survey of parental burden of care, quality of life of parents and their hospitalized children, and satisfaction with family‐centered care

“…The parents work hard to safeguard their hospitalized children with PIMD. These results are in line with the qualitative study by Iversen, Graue, and Raheim (), which demonstrated two common factors in the increased emotional distress of this group of parents: (a) their generally high expectations, commitment, and participation concerning the care of their hospitalized children, that is, they try to be continually available for both their children and their healthcare team; and (b) their tendency to be overwhelmed by their sense of responsibility for the children's well‐being. Additionally, parents are uncertain of their roles in relation to the care team, whose expectations may appear very high in some areas and very low in others.…”

Becoming a parent to a child with birth asphyxia—From a traumatic delivery to living with the experience at home

“…By describing parents’ experiences of becoming a parent to a child with birth asphyxia, circumstances affecting the establishment of the family and appropriate means of supporting the family will hopefully be more clearly described. Parents of children with neuropsychological impairments are at a greater risk of higher stress levels after NICU (Brummelte, Grunau, Synnes, Whitfield, & Petrie-Thomas, 2011; Iversen, Graue, & Råheim, 2013; Treyvaud et al, 2011) and mothers feelings of ambivalence or alienation in relation to the infant, caused by the separation when the infant needs professional care in the NICU, can persist for several years (Jackson, Ternestedt, & Schollin, 2003; Wigert et al, 2006). This further underlines the need to research the experiences of becoming a parent to a child with birth asphyxia treated with hypothermia at the NICU.…”

Erleben und Unterstützungsbedarf von Eltern hospitalisierter Kinder mit Mehrfachbehinderung

“…Zusätzlich sorgen sie sich um ihr meist völlig abhängi-ges Kind, vor allem dann, wenn dessen verbale Kommunikation eingeschränkt ist. Die Eltern versuchen, es zu schützen und fühlen sich aufgrund ihrer Kompetenzen verantwortlich für die medizinisch-pfl egerischen Aufgaben, was als belastender Dauerzustand erlebt wird und oft zu Erschöpfungszuständen führt (Avis & Reardon, 2008;Iversen, Graue & Clare, 2009;Iversen, Graue & Raheim, 2013). Eltern fühlen sich häufi g von medizinischen Fachpersonen nicht verstanden, vor allem wenn diese keine Erfahrung im Umgang mit behinderten Kindern mitbringen oder den Fokus mehr auf die technischen bzw.…”