Two Sides of a Coin: Parental Disease-Specific Training as Seen by Health Care Practitioners and Parents in Pediatric Liver Transplantation.

Johanna Ohlendorf,Imeke Goldschmidt,Ulrich Baumann,Luisa Stasch,Eva-Doreen Pfister,Karin Lange,Gundula Ernst,Christiane Konietzny,Kirsten Sautmann

doi:10.3390/children8090827

Johanna Ohlendorf, Imeke Goldschmidt + Show 7 more

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https://doi.org/10.3390/children8090827

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Journal: Children	Publication Date: Sep 21, 2021
Citations: 1	License type: CC BY 4.0

Affiliation: Hannover Medical School

Abstract

In the absence of widely accepted education standards for parents of children after liver transplantation (LTx), the content and structure of parental training are influenced by health care practitioners’ (HCP) individual knowledge and assessment of the relevance of its contents. This study examines the hypothesis that expectations towards training differ between HCPs and parents, and that the quality of parental training affects the job-satisfaction of HCPs. Attitudes towards disease-specific education were assessed by tailor-made questionnaires in HCPs (n = 20) and parents of children with chronic liver disease or after LTx (n = 113). These were supplemented by focused interviews in n = 7 HCPs and n = 16 parents. Parents were more satisfied with current counseling than HCP. Language barriers and low parental educational background were perceived as obstacles by 43% of HCPs. The quality of parental knowledge was felt to have a strong influence on HCPs job satisfaction. The expectations towards the content of disease-specific education largely overlap but are not synonymous. HCP and parents agreed with regards to the importance of medication knowledge. Parents rated the importance about the meaning of laboratory values and diagnostic procedures significantly higher (3.50 vs. 2.85, p < 0.001 and 3.42 vs. 2.80, p < 0.001) than HCPs. Parents and HCPs would prefer a structured framework with sufficient staff resources for disease-specific counseling.

Highlights

Structured educational interventions are key to the successful management of many different chronic diseases in childhood [1,2,3,4,5]
Lerret et al have examined whether pre-discharge education and the parental perception of readiness for discharge are associated with a reduction in coping difficulties and health-care utilization in children after solid organ transplantation [6]
The overarching aim of this study was to identify the obstacles for parental disease-specific education that need to be overcome for a successful long term outcome of pediatric liver transplantation

Summary

Introduction

Structured educational interventions are key to the successful management of many different chronic diseases in childhood [1,2,3,4,5]. For diseases like type 1 diabetes, atopic eczema or asthma, the beneficial impact of structured disease-specific intervention programs on somatic outcomes and health-related quality of life has been repeatedly demonstrated [1,2,4]. Lerret et al have examined whether pre-discharge education and the parental perception of readiness for discharge are associated with a reduction in coping difficulties and health-care utilization in children after solid organ transplantation [6]. They showed that parental perception of the quality of care coordination was associated with parental readiness for hospital discharge, which in turn was related to the family’s capacity to cope at home [6]. A qualitative analysis of parental expectations identified medication knowledge and the identification of complications as the most important topics for discharge teaching [7]

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