Shared decision-making experiences in child long-term ventilation: a systematic review

George Peat*, Sally-Ann Delaney, Faith Gibson, Lorna K. Fraser, Joe Brierley

*Corresponding author for this work

Research output: Contribution to journalReview articlepeer-review

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Introduction: Recent decades have seen an increase in children receiving long-term ventilation. To ensure that long-term ventilation decisions incorporate the perspectives of stakeholders, it is vital that empirical evidence is gathered to substantiate frameworks and guidance on shared decision-making for long-term ventilation. This systematic review and qualitative evidence synthesis aimed to clarify what shared decision-making constitutes in relation to long-term ventilation initiation for children and young people (<21 years). Methods: A systematic review of qualitative research was undertaken. Searches were conducted in MEDLINE, Embase, CINAHL, PsycINFO and Web of Science. Results: Findings from 13 studies were included representative of 363 caregivers and 143 healthcare professional experiences. Components that support shared decision-making included acknowledging the unique positionality of caregivers and ensuring caregivers were informed about the implications of long-term ventilation. Beneficial qualities of engagement between stakeholders included honest, clear and timely dialogue using lay, tactful and sensitive language. Conclusion: Our findings clarify components and approaches supportive of shared decision-making in discussions about long-term ventilation. This review therefore provides a valuable resource to implement shared decision-making practices in the context of long-term ventilation decisions for children and young people.

Original languageEnglish
Article number230098
Number of pages12
JournalEuropean Respiratory Review
Issue number169
Early online date23 Aug 2023
Publication statusPublished - 30 Sept 2023
Externally publishedYes

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