Parental Caregiver Expectations and Satisfaction Following Hip Reconstruction and Spinal Fusion in Children With Cerebral Palsy

Abstract

Children with severe (Gross Motor Function Classification System [GMFCS] IV–V) cerebral palsy (CP) exhibit profound physical and developmental impairments and require assistance for all activities of daily living. No curative treatments exist although surgical procedures to correct underlying hip and spine deformities can improve their quality of life. Despite the efficacy of these surgeries, little is known regarding parental caregivers' expectations specific to surgical outcomes and their satisfaction with surgical outcomes. The purpose was to explore parental caregiver expectations and satisfaction with hip and spine surgeries that their children with GMFCS IV–V CP underwent. Variations among preoperative expectations, changes in expectations over time, and the relationship of expectations on caregiver satisfaction were examined. A qualitative descriptive approach with conventional content analysis was utilized. Three preoperative caregiver expectation themes were identified: increasing functionality, increasing comfort, and maintaining health and averting crisis. These themes were still present at 5-year follow-up; however, more caregivers refocused their expectations from improving function to providing palliation. A clear relationship between expectations and caregiver satisfaction, however, was not identified. A deeper understanding surrounding caregiver expectation and satisfaction following surgical procedures is needed.