De Rosis Sabina, Bonciani Manila, Spataro Veronica, Corazza Ilaria, Conti Elisa, Sibbles Barbara, Hazelzet Jan A, Lahdenne Pekka, Gehrmann Katariina, Menegazzo Francesca, Sica Michela, Šteina Vita, Esenberga Guna, Chapin Elise M, Solare Stefania, Vainieri Milena
Management and Healthcare Laboratory, Institute of Management, Sant'Anna School of Advanced Studies, Pisa, Italy.
Meyer Children's Hospital IRCCS, Florence, Italy.
JMIR Res Protoc. 2023 Apr 3;12:e42804. doi: 10.2196/42804.
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.
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.
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.
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.
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.
用户反馈是希望改进服务的组织的一项关键资产。研究组织如何促使用户参与评估活动尤为重要，特别是当存在弱势群体或处境不利的人群，且所评估的服务可能改变生活时。儿科住院患者共同评估的情况就是如此。国际文献报道了在系统收集和使用儿科患者住院体验以采取质量改进行动方面的一些尝试和诸多挑战。
本文描述了一个欧洲项目的研究方案，该项目旨在开发并实施一个系统性的儿科患者报告体验测量（PREMs）观测站，芬兰、意大利、拉脱维亚和荷兰的4家欧洲儿童医院将共享该观测站。
VOiCEs（住院期间纳入儿童体验以改善其权利的价值）项目采用参与式行动研究方法，基于定性和定量方法的结合。它包括6个不同阶段，包括文献综述、对项目合作伙伴报告的儿科PREMs先前经验的分析、德尔菲法、与儿童及其照顾者进行焦点小组或深入访谈的循环、与互动工作小组开展的一系列研讨会以及横断面观察性调查。该项目保证儿童和青少年直接参与项目的开发和实施阶段。
预期结果为：（1）更深入了解已发表的关于收集和报告儿科患者声音的方法和工具；（2）从对儿科PREMs先前经验的分析中吸取的教训；（3）通过参与式过程在专家之间、（4）儿科患者及其照顾者之间就一套患者住院评估的标准测量达成共识；（5）实施一个关于儿科PREMs的欧洲观测站；以及（6）收集和比较报告儿科患者的声音。此外，该项目旨在研究并提出创新方法和工具，以直接获取儿科患者的反馈，避免家长/监护人的中介作用。
在过去十年中，PREMs的收集和使用作为一个研究领域变得越来越重要。儿童和青少年的观点也越来越受到重视。然而，迄今为止，在持续、系统地收集和使用儿科PREMs数据以实施及时改进行动方面的经验有限。从这个角度来看，VOiCEs项目提供了创新空间，有助于创建一个国际、持续且系统的儿科PREMs观测站，其他儿童医院或有儿科患者的医院可以加入，并预计在基准测试中返回可用且可操作的数据。
国际注册报告标识符（IRRID）：DERR1-10.2196/42804。
