Children's and adolescents' experiences of living with respiratory assistance: A systematic review of qualitative studies

Abstract

ObjectivesTo date, no review has focused exclusively on the child's reported experience of living with respiratory assistance. The objective of this study was to review empirical studies exploring children's experiences and perceptions of living with respiratory assistance. MethodsLiterature searches (1980–2017) of databases (PubMed, Web of Science, PsycINFO and CINAHL) resulted in 1,750 references. Studies were included if they used qualitative methods to explore children's (under 18 years) experiences of living with respiratory assistance, such as tracheostomies and/or those who were ventilator dependent. Studies that focused only on parents, carers or other family member's perspectives, included only adults, used only quantitative methods or were not published in the English language were excluded. Reference lists of relevant studies were reviewed. Each study meeting criteria was reviewed and assessed and key themes were extracted and grouped. ResultsSeven studies were included in this review. Synthesis of the data identified four main themes: children's understanding of respiratory assistance, identity, social experiences and service delivery. Most children recognised the important function of respiratory assistance on their physical health. They spoke of positive social experiences and some of the challenges they had experienced. Children discussed their experiences of healthcare providers in terms of what was helpful to them and provided suggestions, based on their experience, for future service provision. ConclusionThis review identified the valuable contribution children's perspectives make to the growing evidence-base in this area. Further in-depth explorations are needed to provide greater understanding about children's experiences of living with respiratory assistance. Research exploring the journey of a young person with respiratory assistance is important in developing knowledge and service provision in this field.