Exploring the impacts of dysphagia on quality of life of children and young people: a scoping review

Objectives: Dysphagia, swallowing difficulties, is a common concern for children and young people with cerebral palsy, neurodevelopmental disabilities, and those born prematurely. There is also a growing body of research around the impacts of dysphagia on quality of life. However, little is currently little known about the impacts of dysphagia on the quality of life, participation, and inclusion of children and young people (2-24 years). Our scoping review examined the impacts of dysphagia and the associated interventions on the quality of life, participation and inclusion of children and young people with dysphagia. Methods: A systematic search of the literature was completed following a modified PROSPERO protocol. Five academic databases were searched using a set of search terms related to dysphagia, quality of life, and children/ young people. The search was limited from 2019 to May 2024 to include literature published since a prior scoping review examining the impacts of dysphagia on quality of life across the lifespan. Results: 9,588 citations were retrieved and 76 articles were included. Further analysis of included papers identified that only 11 of the included papers examined quality of life using qualitative or mixed research methods. Fifty of the included studies were quantitative in nature thus did not provide an in-depth description of the lived experiences of participants. A further 12 papers were reviews, and 13 papers only included participants over 18 years of age where participants were classed as adults. Finally, two papers exampled the topic from the perspective of allied health professionals who play an essential role in dysphagia management. Conclusion: Further qualitative research is needed to more richly understand the impacts of dysphagia on quality of life from the perspective of children, young people, their caregivers, and allied health professionals.