A systematic literature review on initiatives to involve children and adolescents in evaluating their hospitalization experience

Background: Despite patient experience being an important topic in healthcare management, most research does not concentrate on initiatives targeted to patients experiencing vulnerabilities, for whom it is challenging to contribute to the processes of feedback collection. In healthcare, children and adolescents can be considered a group of patients experiencing vulnerability, particularly during a sensitive time such as hospitalization. The aim is to provide an overview of the research on patient experience collection initiatives used by healthcare service providers to facilitate children and adolescents’ involvement in the evaluation of their hospitalisation experience. The study attempts to determine if these approaches exist, how they are structured, and what impact they have on services. Methods: This research is based on a systematic literature review. We identified 1498 articles through Scopus, ISI Web of Science, and PubMed. To guarantee transparency and replicability, we adhered to the PRISMA guidelines. The analysis focused on the main elements of the approaches used by the different providers to involve children and adolescents in the evaluation of their hospitalization experience, including the characteristics of patients targeted by the feedback collection initiatives, the methods and tools implemented by healthcare providers, the different dimensions of patient experience on which feedback is requested, the co-design of the initiative, quality and performance implications. Results: Fifty-eight articles were included in the final review. Patient feedback was mostly collected using qualitative tools, which seem more likely to be child-friendly. Quantitative methodologies were shown to be more suitable for standardised and systematic patient experience feedback collection initiatives. The findings indicate a scarcity of innovative tools and gamified techniques, which in turn suggests new potential areas of research by combining qualitative and quantitative methods. Feedback from paediatric patients was collected regarding different aspects of the patient experience. Physical environment and pain management emerge as crucial aspects of the patient experience with hospitalisation, despite the intensive relational service. There is a germinal trend for co-design. Most of the analysed papers only discuss future and potential quality and performance implications of the patient experience feedback collection initiative, opening to questions on its actual impact on outcomes. Mostly sporadic experiences are reported, rather than systematic initiatives of feedback collection. Conclusions: This study contributes to systematising the topic of children and adolescents’ involvement in evaluating their hospitalisation experience. The findings provide insights regarding the approaches service providers can take to encourage vulnerable patients’ direct participation in the evaluation of healthcare services and inform directions for future research.