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

George Peat; Sally Ann Delaney; Faith Gibson; Lorna K. Fraser; Joe Brierley

doi:10.1183/16000617.0098-2023

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

Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation

Research output: Contribution to journal › Review article › peer-review

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.

Original language	English
Article number	230098
Journal	European Respiratory Review
Volume	32
Issue number	169
Early online date	23 Aug 2023
DOIs	https://doi.org/10.1183/16000617.0098-2023
Publication status	Published - 30 Sept 2023

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10.1183/16000617.0098-2023Licence: CC BY-NC

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@article{29a53cef910b45c5a340075d3a1683d4,

title = "Shared decision-making experiences in child long-term ventilation: a systematic review",

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.",

author = "George Peat and Delaney, {Sally Ann} and Faith Gibson and Fraser, {Lorna K.} and Joe Brierley",

note = "Funding Information: Support statement: The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: G. Peat is part-funded by the National Institute for Health and Care Research (NIHR) funded Collaborative Paediatric Palliative Care Research Network (award reference number: NIHR135304) that was awarded to L.K. Fraser. L.K. Fraser is part-funded by an NIHR fellowship (award CDF-2018-11-ST2-002). F. Gibson and J. Brierley are supported in part by the NIHR Great Ormond Street Hospital Biomedical Research Centre. This publication presents independent research funded by the National Institute for Health and Care Research (NIHR). The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care. The funder had no involvement in the study design, data analysis, interpretation, writing the manuscript or submitting for publication. Funding information for this article has been deposited with the Crossref Funder Registry. Publisher Copyright: {\textcopyright} The authors 2023.",

year = "2023",

month = sep,

day = "30",

doi = "10.1183/16000617.0098-2023",

language = "English",

volume = "32",

journal = "European Respiratory Review",

issn = "0905-9180",

publisher = "European Respiratory Society",

number = "169",

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TY - JOUR

T1 - Shared decision-making experiences in child long-term ventilation

T2 - a systematic review

AU - Peat, George

AU - Delaney, Sally Ann

AU - Gibson, Faith

AU - Fraser, Lorna K.

AU - Brierley, Joe

N1 - Funding Information: Support statement: The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: G. Peat is part-funded by the National Institute for Health and Care Research (NIHR) funded Collaborative Paediatric Palliative Care Research Network (award reference number: NIHR135304) that was awarded to L.K. Fraser. L.K. Fraser is part-funded by an NIHR fellowship (award CDF-2018-11-ST2-002). F. Gibson and J. Brierley are supported in part by the NIHR Great Ormond Street Hospital Biomedical Research Centre. This publication presents independent research funded by the National Institute for Health and Care Research (NIHR). The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care. The funder had no involvement in the study design, data analysis, interpretation, writing the manuscript or submitting for publication. Funding information for this article has been deposited with the Crossref Funder Registry. Publisher Copyright: © The authors 2023.

PY - 2023/9/30

Y1 - 2023/9/30

N2 - 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.

AB - 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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U2 - 10.1183/16000617.0098-2023

DO - 10.1183/16000617.0098-2023

M3 - Review article

C2 - 37611948

AN - SCOPUS:85168626127

SN - 0905-9180

VL - 32

JO - European Respiratory Review

JF - European Respiratory Review

IS - 169

M1 - 230098

ER -

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

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