Pediatric Solid Organ Transplant Recipients: Transition to Home and Chronic Illness Care

Pediatric solid organ transplant recipients are medically fragile and present with complex care issues requiring high-level management at home. Parents of hospitalized children have reported inadequate preparation for discharge, resulting in problems transitioning from hospital to home and independently self-managing their child’s complex care needs. The aim of this study was to investigate factors associated with the transition from hospital to home and chronic illness care for parents of heart, kidney, liver, lung, or multivisceral recipients. Fifty-one parents from five pediatric transplant centers completed questionnaires on the day of hospital discharge and telephone interviews at 3-week, 3-month, and 6-months following discharge from the hospital. Care coordination (p = .02) and quality of discharge teaching (p < .01) was significantly associated with parent readiness for discharge. Readiness for hospital discharge was subsequently significantly associated with post-discharge coping difficulty (p = .02) at 3-weeks, adherence with medication administration (p = .03) at 3-months, and post-discharge coping difficulty (p = .04) and family management (p = .02) at 6-months post-discharge. The results underscore the important aspect of education and care coordination in preparing patients and families to successfully self-manage after hospital discharge. Assessing parental readiness for hospital discharge is another critical component for identifying risk of difficulties in managing post-discharge care.