Parents' Perspectives of Surgery for a Child Who Has Cerebral Palsy

Abstract 

Introduction

This article explores parents' experiences when their child who is disabled with cerebral palsy was going through a surgical procedure. The literature suggests that parents' uncertainty is a consistent concept regarding the families' experiences in postoperative recovery unit.

Methods

A hermeneutic phenomenological in-depth interview was used, and data are analyzed and interpreted to reflect the words and actions of the participants. Parents of nine children with cerebral palsy were interviewed during recovery or after the children had recovered from the surgery.

Results

The parents reported feeling vulnerable and helpless in a situation where children cannot express their concerns, and parents were fearful of the consequences of surgery, because they were not familiar with what is going on in the hospital. Extreme tiredness is an unrelenting condition in the experience of these parents, being constantly available for the child but also being strong for the child's sake.

Discussion

Parents perceived that health professionals, especially those with limited experience with children with disabilities, did not understand parents or see parents as unique individuals who are linked to their child in a very special way. The importance of being aware of parents' previous experiences and the need to offer both parents and the child emotional support is clear from this study.

Key words: Cerebral palsy, disability, hermeneutic phenomenology, children, parent's perspective, surgical nursing