Parental caregivers' perception of their transition from hospital to home in children with cerebral palsy who have undergone orthopedic surgery

Abstract

PurposeEvaluate parental perception of the quality of discharge teaching, readiness for discharge, and the impact of these on post discharge coping difficulty and resource utilization in children with cerebral palsy (CP) following surgery. Design and methodsProspective cohort study conducted from September 2017–March 2021 at a pediatric academic medical center. Demographics were collected pre-operatively. Parents completed the Readiness for Hospital Discharge Scale (RHDS) and Quality of Discharge Teaching Scale (QDTS) within four hours of discharge. Four weeks post-discharge, parents completed the Post-discharge Coping Difficulty Scale (PDCDS). Utilization of healthcare resources were extracted from the electronic health record for 90 days post-operatively. Associations among demographics, RHDS, QDTS, PDCDS and resource utilization were assessed using general linear models; PDCDS's open-ended questions were analyzed using directed content analysis. Results114 parental caregivers participated. Post discharge coping was significantly associated with additional resource utilization: length of stay (p = 0.046), readmissions (p = 0.001), emergency department visits (p = 0.001), clinic calls (p = 0.001) and unplanned clinic visits (p = 0.006). PDCDS was negatively correlated with the QDTS Quality of Teaching Delivered subscale (r = −0.32; p = 0.004) and three of five RHDS subscales: 1) Child's Personal Status (r = −0.24; p = 0.02); 2) Knowledge (r = −0.30; p = 0.005); and 3) Coping Ability (r = −0.39; p < 0.001). Four themes explicated parental coping difficulties. ConclusionParents experiencing coping difficulties were more likely to have difficulty managing their child's care needs at home and required additional health care resources. Practice implicationsRecognizing that parents' readiness for discharge may not reflect their coping abilities post-discharge requiring nurses to coordinate pre- and post-discharge education and support services.