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Effectiveness of Interventions to Promote Physical, Psychological, and Socioeconomic Well-being Outcomes of Parents of Children With Neurodevelopmental Disabilities: Protocol for a Systematic Review

BACKGROUND: It is well recognized that parents of children with neurodevelopmental disabilities can experience a considerable burden of care associated with their child’s disability, which can potentially impact their functioning and quality of life. Historically, the intervention efforts in pediatr...

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Autores principales: Novak-Pavlic, Monika, Rosenbaum, Peter, Gazzi Macedo, Luciana, Di Rezze, Briano, Yong, Joshua, Noori, Atefeh, Hughes, Debra
Formato: Online Artículo Texto
Lenguaje:English
Publicado: JMIR Publications 2022
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9377437/
https://www.ncbi.nlm.nih.gov/pubmed/35900806
http://dx.doi.org/10.2196/38686
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author Novak-Pavlic, Monika
Rosenbaum, Peter
Gazzi Macedo, Luciana
Di Rezze, Briano
Yong, Joshua
Noori, Atefeh
Hughes, Debra
author_facet Novak-Pavlic, Monika
Rosenbaum, Peter
Gazzi Macedo, Luciana
Di Rezze, Briano
Yong, Joshua
Noori, Atefeh
Hughes, Debra
author_sort Novak-Pavlic, Monika
collection PubMed
description BACKGROUND: It is well recognized that parents of children with neurodevelopmental disabilities can experience a considerable burden of care associated with their child’s disability, which can potentially impact their functioning and quality of life. Historically, the intervention efforts in pediatric rehabilitation have focused primarily on the child’s development and well-being and much less on parental and family well-being. The impact that a child’s diagnosis might have on parents remains unclear, and it is unknown how we can best support parents on their journey of childhood disability. It is, therefore, important to synthesize the published evidence on interventions for parents of children with neurodevelopmental disabilities so that clinicians can be better informed about the ways in which families they work with can be supported. OBJECTIVE: This manuscript presents the protocol for a systematic review of the effectiveness of interventions aiming to improve the physical, psychological, or socioeconomic well-being of parents of children with neurodevelopmental disabilities when compared to usual care or no care. METHODS: We will systematically search 4 databases (MEDLINE, Embase, PsycINFO, and CINAHL) from the year 2000 until the search date, for randomized controlled trials that evaluated the effectiveness of interventions to improve parental physical, psychological, or socioeconomic well-being. Two authors will independently screen the titles and abstracts, which will then be followed by full-text screening. After the eligibility assessment, two reviewers will independently extract data and conduct a risk of bias assessment using the Cochrane risk-of-bias tool. We will assess the quality of evidence using the Grading of Recommendations, Assessment, Development and Evaluation approach. If the data allow, we will perform a pairwise meta-analysis or network meta-analysis. We plan to evaluate the coherence of the network with a global test by using the node-splitting method. RESULTS: As of May 30, 2022, there have been two searches of data initiated: in September 2020 for articles published since 2000 and an updated search in January 2022 for articles published since 2020. We have screened all the titles and abstracts and performed eligibility assessment. However, the final number of references is still not available due to the additional information needed for some of the potentially eligible studies. The results from this systematic review will be published in an indexed journal within a year after this protocol is published. CONCLUSIONS: This study is expected to identify a variety of programs to address the well-being needs of parents of children with neurodevelopmental disabilities and provide directions on how parents can best be supported within health care. Such interventions might help professionals and stakeholders in creating service delivery models that can enhance parental well-being and minimize the risks to their physical, psychological, and socioeconomic functioning. TRIAL REGISTRATION: PROSPERO CRD42021230706; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=230706 INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/38686
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spelling pubmed-93774372022-08-16 Effectiveness of Interventions to Promote Physical, Psychological, and Socioeconomic Well-being Outcomes of Parents of Children With Neurodevelopmental Disabilities: Protocol for a Systematic Review Novak-Pavlic, Monika Rosenbaum, Peter Gazzi Macedo, Luciana Di Rezze, Briano Yong, Joshua Noori, Atefeh Hughes, Debra JMIR Res Protoc Protocol BACKGROUND: It is well recognized that parents of children with neurodevelopmental disabilities can experience a considerable burden of care associated with their child’s disability, which can potentially impact their functioning and quality of life. Historically, the intervention efforts in pediatric rehabilitation have focused primarily on the child’s development and well-being and much less on parental and family well-being. The impact that a child’s diagnosis might have on parents remains unclear, and it is unknown how we can best support parents on their journey of childhood disability. It is, therefore, important to synthesize the published evidence on interventions for parents of children with neurodevelopmental disabilities so that clinicians can be better informed about the ways in which families they work with can be supported. OBJECTIVE: This manuscript presents the protocol for a systematic review of the effectiveness of interventions aiming to improve the physical, psychological, or socioeconomic well-being of parents of children with neurodevelopmental disabilities when compared to usual care or no care. METHODS: We will systematically search 4 databases (MEDLINE, Embase, PsycINFO, and CINAHL) from the year 2000 until the search date, for randomized controlled trials that evaluated the effectiveness of interventions to improve parental physical, psychological, or socioeconomic well-being. Two authors will independently screen the titles and abstracts, which will then be followed by full-text screening. After the eligibility assessment, two reviewers will independently extract data and conduct a risk of bias assessment using the Cochrane risk-of-bias tool. We will assess the quality of evidence using the Grading of Recommendations, Assessment, Development and Evaluation approach. If the data allow, we will perform a pairwise meta-analysis or network meta-analysis. We plan to evaluate the coherence of the network with a global test by using the node-splitting method. RESULTS: As of May 30, 2022, there have been two searches of data initiated: in September 2020 for articles published since 2000 and an updated search in January 2022 for articles published since 2020. We have screened all the titles and abstracts and performed eligibility assessment. However, the final number of references is still not available due to the additional information needed for some of the potentially eligible studies. The results from this systematic review will be published in an indexed journal within a year after this protocol is published. CONCLUSIONS: This study is expected to identify a variety of programs to address the well-being needs of parents of children with neurodevelopmental disabilities and provide directions on how parents can best be supported within health care. Such interventions might help professionals and stakeholders in creating service delivery models that can enhance parental well-being and minimize the risks to their physical, psychological, and socioeconomic functioning. TRIAL REGISTRATION: PROSPERO CRD42021230706; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=230706 INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/38686 JMIR Publications 2022-07-28 /pmc/articles/PMC9377437/ /pubmed/35900806 http://dx.doi.org/10.2196/38686 Text en ©Monika Novak-Pavlic, Peter Rosenbaum, Luciana Gazzi Macedo, Briano Di Rezze, Joshua Yong, Atefeh Noori, Debra Hughes. Originally published in JMIR Research Protocols (https://www.researchprotocols.org), 28.07.2022. https://creativecommons.org/licenses/by/4.0/This is an open-access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in JMIR Research Protocols, is properly cited. The complete bibliographic information, a link to the original publication on https://www.researchprotocols.org, as well as this copyright and license information must be included.
spellingShingle Protocol
Novak-Pavlic, Monika
Rosenbaum, Peter
Gazzi Macedo, Luciana
Di Rezze, Briano
Yong, Joshua
Noori, Atefeh
Hughes, Debra
Effectiveness of Interventions to Promote Physical, Psychological, and Socioeconomic Well-being Outcomes of Parents of Children With Neurodevelopmental Disabilities: Protocol for a Systematic Review
title Effectiveness of Interventions to Promote Physical, Psychological, and Socioeconomic Well-being Outcomes of Parents of Children With Neurodevelopmental Disabilities: Protocol for a Systematic Review
title_full Effectiveness of Interventions to Promote Physical, Psychological, and Socioeconomic Well-being Outcomes of Parents of Children With Neurodevelopmental Disabilities: Protocol for a Systematic Review
title_fullStr Effectiveness of Interventions to Promote Physical, Psychological, and Socioeconomic Well-being Outcomes of Parents of Children With Neurodevelopmental Disabilities: Protocol for a Systematic Review
title_full_unstemmed Effectiveness of Interventions to Promote Physical, Psychological, and Socioeconomic Well-being Outcomes of Parents of Children With Neurodevelopmental Disabilities: Protocol for a Systematic Review
title_short Effectiveness of Interventions to Promote Physical, Psychological, and Socioeconomic Well-being Outcomes of Parents of Children With Neurodevelopmental Disabilities: Protocol for a Systematic Review
title_sort effectiveness of interventions to promote physical, psychological, and socioeconomic well-being outcomes of parents of children with neurodevelopmental disabilities: protocol for a systematic review
topic Protocol
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9377437/
https://www.ncbi.nlm.nih.gov/pubmed/35900806
http://dx.doi.org/10.2196/38686
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