Quality of life and anticipatory grieving among parents living with a child with cerebral palsy

Abstract

The purpose of this study was to describe the quality of life and anticipatory grieving among Jordanian parents living with a child with cerebral palsy. A cross-sectional, descriptive, correlational design was used with 204 Jordanian parents. Both mothers and fathers were recruited from health-care centres that provided comprehensive care for children with cerebral palsy in Jordan and from schools for special education. Structured interviews were conducted using the Marwit and Meuser Caregiver Grief Inventory Cerebral Palsy and Quality of Life Index. The majority of the parents reported that providing care for a child with cerebral palsy is requiring more emotional energy and determination than ever expected. There was a significant negative correlation between total anticipatory grief score and total quality of life score and all subscales. This indicates that parents with high level of intensity of anticipatory grief had lower quality of life. No statistically significant differences were found in anticipatory grief and quality of life responses between mothers and fathers. The outcomes of this study have important implications for encouraging family-centred care and inform policy to improve the lives of children with cerebral palsy and their parents.