Value of Including the Children’s Experience for Improving Their Rights During Hospitalization: Protocol for the VoiCEs Project

Abstract

Background Users’ feedback is a key asset for organizations that want to improve their services. Studying how organizations are enabling their users to participate in evaluation activities is particularly important, especially when there are vulnerable or disadvantaged people, and the services to be evaluated can be life-changing. This is the case in the coassessment by pediatric patients experiencing hospital stay. The international literature reports a few attempts and several challenges in systematically collecting and using the pediatric patient experience with respect to hospitalization, to undertake quality improvement actions. Objective This paper describes the research protocol of a European project intended to develop and implement a systematic pediatric patient-reported experience measures (PREMs) observatory that will be shared by 4 European children’s hospitals in Finland, Italy, Latvia, and the Netherlands. Methods The VoiCEs (Value of including the Children’s Experience for improving their rightS during hospitalization) project uses a participatory action research approach, based on a mixture of qualitative and quantitative methods. It consists of 6 different phases, including a literature review, an analysis of the previous experiences of pediatric PREMs reported by project partners, a Delphi process, a cycle of focus groups or in-depth interviews with children and their caregivers, a series of workshops with interactive working groups, and a cross-sectional observational survey. The project guarantees the direct participation of children and adolescents in the development and implementation phases of the project. Results The expected results are (1) a deeper knowledge of published methodologies and tools on collecting and reporting pediatric patients’ voice; (2) lessons learnt from the analysis of previous experiences of pediatric PREMs; a consensus reached through a participatory process (3) among experts, (4) pediatric patients and caregivers about a standard set of measures for the evaluation of hospitalization by patients; (5) the implementation of a European observatory on pediatric PREMs; and (6) the collection and comparative reporting of the pediatric patients’ voice. In addition, the project is aimed at studying and proposing innovative methodologies and tools for capturing the pediatric patients’ feedback directly, avoiding the intermediation of parents/guardians. Conclusions Over the last decade, the collection and use of PREMs have gained importance as a research field. Children and adolescents’ perspectives have also been increasingly taken into consideration. However, to date, there are limited experiences regarding the continuous and systematic collection and use of pediatric PREMs data for implementing timely improvement actions. In this perspective, the VoiCEs project provides room for innovation, by contributing to the creation of an international, continuous, and systematic pediatric PREMs observatory that can be joined by other children’s hospitals or hospitals with pediatric patients, and foresees the return of usable and actionable data in benchmarking. International Registered Report Identifier (IRRID) DERR1-10.2196/42804

MyHospitalVoice – a digital tool co-created with children and adolescents that captures patient-reported experience measures: a study protocol

“…Based on the European Organisation for Research and Treatment of Cancer's (EORTC) framework for developing and validating questionnaire modules [20], we will build on existing PREMs for children and adolescents [10][11][12][13] and collaborate with children and adolescents to co-create, digitalise, and validate our MyHospitalVoice PREMs.…”

“…Since the review’s publication, more action has been taken to represent the voice of children and adolescents. The overall goal of a European project initiated in 2021 entitled, V alue o f i ncluding the C hildren’s E xperience for improving their right S during hospitalization’ (VoiCES) is to develop and implement a joint PREM observatory across European children’s hospitals [ 10 ]. Involving several phases and qualitative and quantitative methods, researchers, clinicians, children, adolescents, and families from Finland, Italy, Latvia, and the Netherlands participated in developing and validating the VoiCES PREMs.…”

Passoscuro e oltre: riflessioni sul passato e sulle possibilità future

“…L'ultima fase è l'implementazione sul campo dell'indagine con i neo definiti questionari PREMs pediatrici condivisi, l'analisi delle risposte a livello di ciascun ospedale e la loro consultazione anche in benchmarking con gli altri ospedali del consorzio. I processi di raccolta, elaborazione e condivisione dei dati sono diversi e specifici per ogni fase dell'attività di ricerca [5].…”

“…Allo stato attuale non esiste uno standard europeo relativo ai PREMs pediatrici. Presentiamo qui il protocollo del progetto europeo Value of including the Children's Experiences for improving their ri-ghtS during hospitalization (VoiCEs) [5], con un focus sulla sua applicazione in Italia, presso l'AOU Meyer. Il progetto di ricerca si concentra sullo sviluppo di un osservatorio comune e scalabile a livello europeo ed extra-europeo, che raccolga la voce dei pazienti pediatrici, ne faciliti la partecipazione diretta e metta a disposizione delle organizzazioni sanitarie i dati raccolti.…”