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Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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2023 Special Edition 1 - Parent Perspectives List
Text
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Citation List Month
2023 SE1 - Parent Perspectives
URL Address
<a href="http://doi.org/10.1177/1355819618762960" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1177/1355819618762960</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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What constitutes meaningful engagement for patients and families as partners on research teams?
Publisher
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Journal of Health Services Research & Policy
Date
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2018
Creator
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Black A; Strain K; Wallsworth C; Charlton SG; Chang W; McNamee K; Hamilton C
Description
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Objective There is growing emphasis on health care organizations to ensure that lay people are meaningfully engaged as partners on research teams. Our aim was to explore the perspectives of patients, family members and informal caregivers who have been involved on health care research teams in Canada and elicit their recommendations for meaningful engagement. Methods We conducted a qualitative study guided by thematic analysis of transcripts of focus groups and interviews of 19 experienced patient research partners in Canada. Results We identified four main themes: research environment, expectations, support and value, which highlight participants' combined perspectives on important factors to ensure their engagement in research is meaningful. Conclusions Our findings add to the evolving evidence base on the perspectives of lay people involved in health care research and their recommendations for research leaders on meaningful engagement. Our study suggests that research leaders should provide a welcoming research environment, outline appropriate expectations for patient research partners on research teams, support patient research partners' engagement in projects and recognize the value patient research partners bring to health research.
Identifier
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<a href="http://doi.org/10.1177/1355819618762960" target="_blank" rel="noreferrer noopener">10.1177/1355819618762960</a>
Rights
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2018
2023 SE1 - Parent Perspectives
Adult Aged
Aged
Attitude To Health
Black A
Canada
Caregivers
Chang W
Charlton SG
Family and Patient Participation
family engagement
Hamilton C
Journal of Health Services Research & Policy
McNamee K
patient engagement in research
Patient experience
patient-oriented research
Psychology
Qualitative
Research Subjects
Researcher-Subject Relations
Strain K
Wallsworth C
Young Adult
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Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
2023 Special Edition 1 - Parent Perspectives List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
2023 SE1 - Parent Perspectives
URL Address
<a href="http://doi.org/10.1111/hex.13227" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1111/hex.13227</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Shortening and validation of the Patient Engagement In Research Scale (PEIRS) for measuring meaningful patient and family caregiver engagement
Publisher
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Health Expectations
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Creator
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Hamilton CB; Hoens AM; McKinnon AM; McQuitty S; English K; Hawke LD; Li LC
Description
An account of the resource
OBJECTIVE: To shorten the Patient Engagement In Research Scale (PEIRS) to its most essential items and evaluate its measurement properties for assessing the degree of patients' and family caregivers' meaningful engagement as partners in research projects. METHODS: A prospective cross-sectional web-based survey in Canada and the USA, and also paper-based in Canada. Participants were patients or family caregivers who had engaged in research projects within the last 3 years, were ≥17 years old, and communicated in English. Extensive psychometric analyses were conducted. RESULTS: 119 participants: 99 from Canada, 74 female, 51 aged 17-35 years and 50 aged 36-65 years, 60 had post-secondary education, and 74 were Caucasian/white. The original 37-item PEIRS was shortened to 22 items (PEIRS-22), mainly because of low inter-item correlations. PEIRS-22 had a single dominant construct that accounted for 55% of explained variance. Analysis of PEIRS-22 scores revealed the following: (1) acceptable floor and ceiling effects (<15%), (2) internal consistency (ordinal alpha = 0.96), (3) structural validity by fit to a Rasch measurement model, (4) construct validity by moderate correlations with the Public and Patient Engagement Evaluation Tool, (5) good test-retest reliability (ICC(2,1) = 0.86) and (6) interpretability demonstrated by significant differences among PEIRS-22 scores across three levels of global meaningful engagement in research. CONCLUSIONS: The shortened PEIRS is valid and reliable for assessing the degree of meaningful patient and family caregiver engagement in research. It enables standardized assessment of engagement in research across various contexts. PATIENT OR PUBLIC CONTRIBUTION: A researcher-initiated collaboration, patient partners contributed from study conception to manuscript write-up.
Identifier
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<a href="http://doi.org/10.1111/hex.13227" target="_blank" rel="noreferrer noopener">10.1111/hex.13227</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2021
2023 SE1 - Parent Perspectives
Adolescent
Caregivers
Cross-sectional Studies
English K
family caregiver
Female
Hamilton CB
Hawke LD
Health Expectations
Hoens AM
Humans
Li LC
McKinnon AM
McQuitty S
patient and public involvement
Patient Participation
patient-oriented research
Prospective Studies
Psychometrics
reliability and validity
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Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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PedPalASCNet Member Posters
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Contributions and recognition of patient partners in pediatric health research: a rapid scoping review protocol
Creator
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Pawliuk C; Hermansen AM; Barrans C; Siden H
Identifier
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<a href="https://doi.org/10.31219/osf.io/svztf">10.31219/osf.io/svztf</a>
Publisher
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OSF Preprints
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Description
An account of the resource
Objective: The objective of this rapid scoping review is to: 1) assess the prevalence of acknowledgement and authorship of patient partners in pediatric health research; 2) understand how patient partners contribute through the research process; and 3) assess how patient engagement is identified in publications.
Introduction: Patient-Oriented Research (POR) is an area of increasing interest and activity, with growing funding opportunities. Patient partners with significant contributions to a research project may be eligible for formal acknowledgment or authorship, however locating patient-engaged studies is difficult and time consuming, so there is little understanding of the prevalence of patient partner acknowledgement or authorship and how patient partners typically contribute to research projects.
Inclusion criteria: This rapid scoping review will consider evidence sources that investigate topics related to pediatric patients aged (0-19 years) and that include acknowledgement or descriptions of one or more patient partner(s) contributions in one or more studies. We will exclude sources that include non-pediatric patients, are not in English, and not published in full in a journal (e.g. conference abstracts).
Methods: We will search MEDLINE (Ovid), Embase (Ovid) and CINAHL (EBSCOhost). In addition, we will search key sources of POR literature. To increase the rapidity of this review, only 25% of sources will be reviewed and extracted by two team members and the remaining sources will be screened and extracted by a single reviewer. Data will be extracted using a data extraction tool developed by the reviewers. The results will be presented in a tabular/and/or charted format and accompanied by a narrative summary describing how the results related to the review objectives and questions.
acknowledgement
Authorship
Barrans C
Hermansen AM
patient and public involvement
patient partner
Patient Partner Recognition
patient-oriented research
Pawliuk C
Preprint
protocol
rapid review
Scoping review
Siden H