Pediatric solid organ transplant recipients: Transition to home and chronic illness care

Abstract

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.

Discharge Teaching, Readiness for Discharge, and Post-discharge Outcomes in Parents of Hospitalized Children

“…The findings on the trajectory of influence from parent perception of the quality of delivery of the discharge teaching to parent readiness for discharge and post-discharge coping difficulty mirrors findings from prior studies by the authors with general pediatric (Weiss et al, 2008), and solid organ transplant parents (Lerret & Weiss, 2011;Lerret et al, 2015). The strength of the association of QDTS-delivery to Parent RHDS, with a 1 point change (on a 10 point scale) in quality of delivery of discharge teaching associated with a half point (0.54) change (on a 10 point scale) in discharge readiness, underscores the importance of the skills nurses use to teach parents.…”

“…The total scale score was used in this study and is reported as the mean of item scores; scores can range from 0 to 10. Cronbach's alpha reliability estimates are high ranging from 0.83 to 0.92 in various population groups including adult medical surgical patients, older adults, and parents of hospitalized children and predictive validity testing indicated an inverse relationship with post-discharge difficulty coping (Lerret & Weiss, 2011;Lerret et al, 2015;Weiss et al, 2007Weiss et al, , 2008Weiss et al, , 2011Weiss & Lokken, 2009). Construct validity was supported from confirmatory factor analysis (Weiss & Piacentine, 2006).…”

“…Thirty percent of these pediatric readmissions are estimated to be preventable (Toomey et al, 2016). When parents of hospitalized children report feeling unprepared for discharge, they have difficulty transitioning from hospital to home and managing their child's complex care needs (Weiss et al, 2008;Lerret & Weiss, 2011;Lerret et al, 2015), leading to problems that may result in returning to the hospital for an emergency department (ED) visit or readmission. In a recent study, both parents and providers consider readmissions and ED visits preventable, with parent education that prepares families for discharge and the transition to family management at home viewed as one of the major opportunities for improvement (Amin et al, 2016).…”

Poster Session #4: Economics, Programs, Growth and Psychosocial Development

“…Parents also have a strong impact on identity development [3] . In transplantation, there is a need to understand identity development [4] . The literature shows that adolescent recipients' perceive their parents as overprotective, and feelings of guilt and obligation toward the donor, particularly when the donor is alive, can act as obstacles to identity development [4] .…”

“…In transplantation, there is a need to understand identity development [4] . The literature shows that adolescent recipients' perceive their parents as overprotective, and feelings of guilt and obligation toward the donor, particularly when the donor is alive, can act as obstacles to identity development [4] . Many parents see themselves as overprotective and have a hard time promoting autonomy and independence in their growing teenager [5] .…”