Transition from hospital to home following pediatric solid organ transplant: Qualitative findings of parent experience

Abstract

Transplant providers are challenged to determine appropriate interventions for patients and families due to limited published research regarding the context of the post-discharge experience from the perspective of parents of transplanted children. The purpose of this study is to describe the parent perspective of the transition from hospital to home following their child’s solid organ transplant. Within a mixed-methods design, 37 parents of pediatric heart, kidney and liver transplant recipients from three pediatric hospitals responded to qualitative interview questions on the day of hospital discharge and three weeks following hospital discharge. Insight to the discharge preparation process revealed necessary education components. Post-discharge themes were identified for coping, knowledge and adherence. The parents’ responses provide awareness as to specific stressors and concerns parents are faced with when their child is discharged from the hospital after solid organ transplant and opportunities for ways the transplant team can provide support.

Family Organization in the Care of Pediatric Heart Transplant Patients: The Genogram as an Investigative Tool

“…The highest percentage of women as primary caregivers corroborates with national [16] and international studies [15]. Even with their insertion in the labour market, women have historically played the role of primary caregiver.…”

“…Low education levels found in participants is a worrying factor, being directly associated with the degree of understanding and following care recommendations given to the transplanted patient's primary caregiver [15].…”

“…Guidance from all those involved in the care of the child/teenager transplant patient are essential, since the whole family structure is shaken after a transplant. In an international study conducted with 37 relatives of renal and pediatric liver transplants, it was found that the main concern of the family caregivers were related to hospital discharge and the care that should be provided at home [15].…”

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

“…Discharge teaching typically consists of structured teaching about disease process and the skills needed for medical self-care. This content may not fully meet the comprehensive needs of parents for managing the demands of the child's care within their own context of home and family life (Smith & Daughtrey, 2000;Lerret et al, 2014). Education of patients and families/caregivers should encompass providing information, developing care skills, fostering informed decision-making, and building confidence in the management of care needs at home after discharge (McMurray, Johnson, Wallis, & Patterson, 2007;Coleman et al, 2013).…”

Describing pediatric hospital discharge planning care processes using the Omaha System

“…This finding is supported by knowledge of the practice of both SW and DPN at the facility, in which both disciplines plan for the provision of technical activities such as wound care, specimen collection, or exercises at home, versus providing hands-on care themselves. In contrast, in complex care situations that involve an advanced practice nurse (eg, a transplant coordinator) in the continuum of care from inpatient to outpatient services, the DP functions may include medical treatments and procedures, as well as the discharge management responsibilities (Lerret et al, 2014). This was true in the studies of adult patients (Bowles, 2000b, Brooten et al, 2003and Naylor et al, 2000.…”