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Research article
Suzanne Guerin
University College Dublin
Corresponding Author
ORCiD: https://orcid.org/0000-0002-6744-7590
License:
This work is licensed under a CC BY 4.0 License. Read Full License
Background: The aim of this study was to explore expert professionals’ opinions on service provision to children under six with life-limiting neurodevelopmental disabilities (LLNDD), including the goals of care and the integration and coordination of palliative care in general and specialist services.
Methods: A Delphi design was used with three survey questionnaire rounds, one open-ended and two closed response rounds. Primary data collected over a six-month period from expert professionals with five years’ (or more) experience in pediatric, intellectual disability and/or palliative care settings. Ratings of agreement and prioritization were provided with agreement expressed as a median (threshold = 80%) and consensus reported as interquartile ranges. Stability was measured using non-parametric tests.
Results: Primary goals of care were achievement of best possible quality of life, effective communication and symptom management. Service integration and coordination were considered inadequate, and respondents agreed that areas of deficiency included palliative care. Improvement strategies included a single care plan, improved communication and key worker appointments.
Conclusions: The findings suggest that services do not serve this group well with deficiencies in care compounded by a lack of information on available services and sub-optimal communication between settings. Further research is needed to develop an expert-based consensus regarding the care of children with LLNDD.
Keywords
Life limiting neurodevelopmental disability, children and families, services, Delphi study
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CURRENT STATUS: Published
View the published article at BMC Health Services Research.
No community comments so far
Submission checks complete
On 24 Sep, 2020
Editorial decision: Accept
On 22 Sep, 2020
No comments provided
Editorial decision: Minor revision
On 11 Sep, 2020
Editor assigned
On 06 Sep, 2020
Submission checks complete
On 05 Sep, 2020
Editor invited
On 05 Sep, 2020
Version 2
Posted 19 Jun, 2020
No comments provided
Editorial decision: Minor revision
On 21 Aug, 2020
Review #1 received
Received 12 Jul, 2020
Reviewer #1 agreed
On 25 Jun, 2020
Reviewers invited
Invitations sent on 24 Jun, 2020
Editor assigned
On 19 Jun, 2020
Submission checks complete
On 18 Jun, 2020
Editor invited
On 18 Jun, 2020
No comments provided
Editorial decision: Major revision
On 13 May, 2020
Review #1 received
Received 08 Oct, 2019
Review #2 received
Received 08 Oct, 2019
Reviewer #2 agreed
On 27 Sep, 2019
Reviewers invited
Invitations sent on 26 Sep, 2019
Reviewer #1 agreed
On 26 Sep, 2019
Submission checks complete
On 10 Sep, 2019
Editor assigned
On 22 Aug, 2019
Editor invited
On 21 Aug, 2019
First submitted
On 19 Aug, 2019
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PDF Downloads: ...
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Subject Areas
Health Policy
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A new preprint design is coming!
We have improved readability, clarity, accessibility, and opportunities for engagement.
See the published version of this preprint at BMC Health Services Research.
This is a preprint, a preliminary version of a manuscript that has not completed peer review at a journal. Research Square does not conduct peer review prior to posting preprints. The posting of a preprint on this server should not be interpreted as an endorsement of its validity or suitability for dissemination as established information or for guiding clinical practice.
Learn more about In Review
Research article
Suzanne Guerin
University College Dublin
Corresponding Author
ORCiD: https://orcid.org/0000-0002-6744-7590
Badges
Prescreen
This manuscript passed our Prescreen assessment
Complete author information
Appropriate declaration statements
Potential risks to human health
Prescreen
Peer Review Timeline
CURRENT STATUS: Published
View the published article at BMC Health Services Research.
No community comments so far
Submission checks complete
On 24 Sep, 2020
Editorial decision: Accept
On 22 Sep, 2020
No comments provided
Editorial decision: Minor revision
On 11 Sep, 2020
Editor assigned
On 06 Sep, 2020
Submission checks complete
On 05 Sep, 2020
Editor invited
On 05 Sep, 2020
Version 2
Posted 19 Jun, 2020
No comments provided
Editorial decision: Minor revision
On 21 Aug, 2020
Review #1 received
Received 12 Jul, 2020
Reviewer #1 agreed
On 25 Jun, 2020
Reviewers invited
Invitations sent on 24 Jun, 2020
Editor assigned
On 19 Jun, 2020
Submission checks complete
On 18 Jun, 2020
Editor invited
On 18 Jun, 2020
No comments provided
Editorial decision: Major revision
On 13 May, 2020
Review #1 received
Received 08 Oct, 2019
Review #2 received
Received 08 Oct, 2019
Reviewer #2 agreed
On 27 Sep, 2019
Reviewers invited
Invitations sent on 26 Sep, 2019
Reviewer #1 agreed
On 26 Sep, 2019
Submission checks complete
On 10 Sep, 2019
Editor assigned
On 22 Aug, 2019
Editor invited
On 21 Aug, 2019
First submitted
On 19 Aug, 2019
Metrics
Comments: 0
PDF Downloads: ...
HTML Views: ...
Subject Areas
Health Policy
License:
This work is licensed under a CC BY 4.0 License. Read Full License
View the published article at BMC Health Services Research.
Background: The aim of this study was to explore expert professionals’ opinions on service provision to children under six with life-limiting neurodevelopmental disabilities (LLNDD), including the goals of care and the integration and coordination of palliative care in general and specialist services.
Methods: A Delphi design was used with three survey questionnaire rounds, one open-ended and two closed response rounds. Primary data collected over a six-month period from expert professionals with five years’ (or more) experience in pediatric, intellectual disability and/or palliative care settings. Ratings of agreement and prioritization were provided with agreement expressed as a median (threshold = 80%) and consensus reported as interquartile ranges. Stability was measured using non-parametric tests.
Results: Primary goals of care were achievement of best possible quality of life, effective communication and symptom management. Service integration and coordination were considered inadequate, and respondents agreed that areas of deficiency included palliative care. Improvement strategies included a single care plan, improved communication and key worker appointments.
Conclusions: The findings suggest that services do not serve this group well with deficiencies in care compounded by a lack of information on available services and sub-optimal communication between settings. Further research is needed to develop an expert-based consensus regarding the care of children with LLNDD.
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