Parents' perspectives on caring for children after solid organ transplant

Purpose To explore parents’ experiences of the transition from hospital to home and complex chronic illness management following their children's solid organ transplant (SOT). Design and Methods Qualitative component of a larger mixed methods longitudinal study. Parents of SOT recipients were interviewed three times following hospital discharge from five major pediatric transplant hospitals in the United States. Results Analysis of parent interviews (N = 48) resulted in three themes that characterized the phases of transition to home and complex chronic illness care. Three themes, corresponding to the three time periods of data collection, included “getting back to normal” at 3 weeks, “becoming routine” at 3 months, and “facing a future” at 6 months. Challenges families experienced over the course of their transition are also described. Practice Implications The transition from hospital to home and complex chronic condition care is challenging and changes over time. Nurses are called upon to prepare parents to become knowledgeable and confident to care for the child after hospital discharge. Nurses can best support families in transition after SOT by anticipating and understanding their dynamic challenging complex care needs.