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. 2023 Aug 23;32(169):230098.
doi: 10.1183/16000617.0098-2023. Print 2023 Sep 30.

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

George Peat  1   2 , Sally-Ann Delaney  3 , Faith Gibson  4   5 , Lorna K Fraser  2   6 , Joe Brierley  4   7
Affiliations

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

George Peat et al. Eur Respir Rev. .

Abstract

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.

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Conflict of interest statement

Conflicts of interest: G Peat was part-funded during the conduct of the review by the NIHR funded Collaborative Paediatric Palliative Care Research Network (award reference number: NIHR135304) that was awarded to L.K. Fraser. The remaining authors disclose no potential conflicts of interest.

Figures

FIGURE 1
FIGURE 1
Preferred Reporting Items for Systematic Reviews and Meta-Analyses flowchart showing the inclusion of 17 articles (13 studies) from 2347 identified.
FIGURE 2
FIGURE 2
Thematic map.
See this image and copyright information in PMC

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