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https://d1y502jg6fpugt.cloudfront.net/32554/archive/files/bae0848f9d5094f89e6c21bc0d30dc60.pdf?Expires=1712793600&Signature=qKiF9eua8fdYjm3Vq1-k9siwXdDeD9OkknI8jl2Ke%7ERnsWILUYlAKpER2Mm2Bdfs%7E7ldU9GBkiowzfZL1Htb5fHlD8pv6mekSSjT%7EkSc9vt97y0Fm1Ui6zcwdP49zsC8Y8Nu8qwL1RxeOWoAUnxQ1Xj7GOVgnFcahGbGR4pv6rw9MhHczay1v1pizlmr9lwL90GJpc98F-AleBRflRct5trLOZMoVllznut%7EGbdkfIZ4mrQFsDsZi8yIvDE5feeRYjy0Fm%7EPipaeZLQdBqsJuRYvAvoNYVJmRKyeqxgdsvxcTm%7E-Q6FkVmzTF53xb33oOtOFyJUJmYVmnzyXmyA5aQ__&Key-Pair-Id=K6UGZS9ZTDSZM
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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
PedPalASCNet Member Posters
Still Image
A static visual representation. Examples include paintings, drawings, graphic designs, plans and maps. Recommended best practice is to assign the type Text to images of textual materials.
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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Exploring what motivates parents of children living with medical complexity to participate in research studies: An Interpretive Phenomenology study (Poster)
Creator
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Kim L; Siden H; Cook K; Hermansen AM
Date
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2022
Rights
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<span>Article information provided for research and reference use. It is licensed under the Creative Commons License: </span><a href="https://creativecommons.org/licenses/by-nc-nd/4.0/">Attribution-NonCommercial-NoDerivatives 4.0 International (CC BY-NC-ND 4.0)</a>
2022
Cook K
Hermansen AM
Kim L
Motivations Study
Parent Participation
Siden H
-
https://d1y502jg6fpugt.cloudfront.net/32554/archive/files/446f1dc836ee19eeace59c1be66d6c06.pdf?Expires=1712793600&Signature=mbSRsTtRMihZont%7ExbrLvQuz3E1PjqtJgO0GZ78bus7SbZHjZUO2xKFKRgqdmA%7Eh4RxZVG9pISdfbDavHO-f1qUnTJs1bN9nkjRykHiYqgm9BS%7Ej7-TvXHd7G%7EznFw47iWhdjBvdgxrLJQxFycC04GGwrNwsjdWnKBQ1sCT27o053VAD5fakriynaiZrWKk5-C2EeRh%7EduIRoyq6tIUtXPyUdTyjt61EdnhioLDtFw1HXZxTzMQcJCxcHwK%7EnoG%7EuS6r8FNkZaH7x1FjPhzZzFNMPRaWIkaMuoDNS-rBW42V2PoFFCx7fb4RAI0MiCQUoyIA%7EN15ESzp4kSyZPj0-A__&Key-Pair-Id=K6UGZS9ZTDSZM
18ebfb0f1af02fc26375fabf6277c56a
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
Still Image
A static visual representation. Examples include paintings, drawings, graphic designs, plans and maps. Recommended best practice is to assign the type Text to images of textual materials.
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 are the motivators and barriers to research participation? (Poster)
Creator
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Kim L; Siden S; Cook K; Hermansen AM
Identifier
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<a href="https://dx.doi.org/10.14288/1.0398352">10.14288/1.0398352</a>
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Description
An account of the resource
Derived from our experience of recruiting children with medical complexity for research studies, the “Motivations Study” will help us understand the complex barriers to research participation for parents of a child with a serious illness. In this qualitative research study we are asking parents important questions about what research means to them and why or why not they have chosen to participate in it. This line of questioning moves beyond the standard feedback form that asks participants whether their experience in a study was positive or negative, towards a deeper understanding of how research participation is understood and experienced from the point of view of a parent deeply engaged in the health care of their medically complex child. We recognize that only a qualitative methodology will enable us to gain a deeper understanding of this issue. We have chosen a qualitative research approach, known as Interpretive Phenomenological Analysis (IPA) as the foundation for this study. This methodology will allow us to reflect on the deeper meaning of participating in research through the collection of individual narratives of such experiences. We are conducting semi-structured interviews with 15 families to gather a plethora of rich stories about these individual’s experiences participating in research or perhaps - not participating. Importantly, we have also chosen for our staff Family Liaison, a parent-partner in our larger program of research, to be the study lead. Our Family Liaison plays an invaluable role in bridging clinical and academic research agendas with the realities of the families that enter our research program. As our Family Liaison is herself the parent of a child with medical complexity and carries with her years of experience navigating the health care system, she is uniquely positioned to connect with study participants from a shared context. We believe that this shared context will create meaningful conversation and allow us a deep understanding of what moves parent to give their time, energy and medical charts for the benefit of researchers, or prevents them from doing so.
Rights
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<span>Article information provided for research and reference use. It is licensed under the Creative Commons License: </span><a href="https://creativecommons.org/licenses/by-nc-nd/4.0/">Attribution-NonCommercial-NoDerivatives 4.0 International (CC BY-NC-ND 4.0)</a>
Ama Journal Of Ethics
Cook K
Family Liaison
Hermansen AM
Kim L
Motivations Study
Parent Participation
Siden S
-
https://d1y502jg6fpugt.cloudfront.net/32554/archive/files/62591765c20d70ce5d0869a104bd8901.pdf?Expires=1712793600&Signature=kWGmtx4ZKNCQqQiI18LNQk1eBm6rn5m7t2MyipLbr7C18PA%7EH3OjCYSbE1JgFJd749sRrmr76x%7EVlV41e50pa9AIQZObOWHe3LwPieu%7E1Ere0iCqTdms7qNJS5Gcb53f40Ii-daQt6GkkoxLE-YteFZ9hwB7ftjUw5uzcC2IhAiRdZQcy-eDf7FQyxhiLd037LNNFvNmhOO%7Emb%7E9pvVFHY6jWIhRfs0VR2DvWSkgofaNa64bE2OeCQAZ8Zt3V-IHgy4qjzv9PEKqin3IdP91YRtlg9PS%7EcrbK1d9sy-bP0mmFTHjvD46%7E5e7cf5PRtg79MbA8hgmomiRzWHfFEnhSw__&Key-Pair-Id=K6UGZS9ZTDSZM
6664acdd4a7a3750bdab4162c4338a10
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
Still Image
A static visual representation. Examples include paintings, drawings, graphic designs, plans and maps. Recommended best practice is to assign the type Text to images of textual materials.
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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The Family Liaison : an integral part of our research team (Poster)
Creator
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Hermansen AM; Kim L; Siden H
Identifier
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<a href="http://hdl.handle.net/2429/78621">10.14288/1.0398351</a>
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Description
An account of the resource
In caring for children with serious illness the clinician’s approach is always family centred. As such our clinical research team has continuously involved families in our studies beyond their role as participants in our research. A Family Advisory Group reviews our project proposals and protocols and participating families provide feedback on their experience after graduating from one of our studies. However, in learning about patient-oriented research strategies through our engagement with the CHILD-BRIGHT network, we have come to realize that in order to fully partner with families, specifically parents of children participating in our research, we need to have an embedded team member who acts as a parent-partner in all our endeavours. Therefore we have created the role of Family Liaison as a fixed part of our team makeup and hired Laesa Kim to fill this position. Laesa’s job goes beyond that of advisor for two important reasons: She holds a paid position within our staff group and her contribution to our program supersedes that which can be expected of volunteer committee members. The Family Liaison is a bridge between researchers and participants, not just in the connections she makes when translating the research objectives and protocols to participants, but also in bringing a parent or patient perspective to every stage of study design and roll out. Along with Laesa’s specific job description comes expectations of rather unique credentials to successfully fill the role. Laesa shares in the lived experience of our participants as the mother of a medically complex child, with years of learning to understand and navigate health care systems. Her experience coupled with a disposition for connecting with health care providers as well as fellow parents of children needing health care while understanding and advocating for the specific needs of this population, positions her perfectly to fill this role. We will describe the value of the Family Liaison within our team as an integral part of our research program while showing the power of investing in patient-oriented research strategies to advance our projects.
Rights
Information about rights held in and over the resource
<span>Article information provided for research and reference use. It is licensed under the Creative Commons License: </span><a href="https://creativecommons.org/licenses/by-nc-nd/4.0/">Attribution-NonCommercial-NoDerivatives 4.0 International (CC BY-NC-ND 4.0)</a>
2021
Family Liaison
Hermansen AM
Kim L
Parent Participation
Siden H
-
Dublin Core
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Title
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June 2022 List
Text
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Citation List Month
June 2022 List
URL Address
<a href="http://doi.org/10.12927/hcq.2022.26778" target="_blank" rel="noreferrer noopener">http://doi.org/10.12927/hcq.2022.26778</a>
Dublin Core
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Title
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Ensuring Equity and Inclusion in Virtual Care Best Practices for Diverse Populations of Youth with Chronic Pain
Publisher
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Healthcare Quarterly (Toronto, Ontario)
Date
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2022
Subject
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Adolescent; Canada; Chronic Pain; COVID-19; Humans; Pandemics
Creator
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Birnie KA; Killackey T; Backlin G; Gavin F; Harris C; Jordan I; Kim L;Marianayagam J; Swidrovich J; Lalonde C; Tunji-Ajayi L; Oberlander T; Kirby-Allen M; Lambert S; Siden H; Swidrovich J; Noel M; Lalloo C; Stinson J
Description
An account of the resource
Poor access to care is a top patient-oriented research priority for youth with chronic pain in Canada, and the COVID-19 pandemic has exacerbated these concerns. Our patient-oriented project team engaged with marginalized and racialized youth with chronic pain (Black youth with sickle cell disease, Indigenous youth and youth with complex medical needs) and their families to ensure that best practice recommendations for virtual care are inclusive and equitable. Input provided through virtual round-table discussions improved recommendations for leveraging, implementing and selecting best platforms for virtual care for youth with chronic pain and identified new gaps for future research, practice and policy change.
Identifier
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<a href="http://doi.org/10.12927/hcq.2022.26778" target="_blank" rel="noreferrer noopener">10.12927/hcq.2022.26778</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).
2022
Adolescent
April 2022 List
Backlin G
Birnie KA
Canada
Chronic Pain
COVID-19
Gavin F
Harris C
Healthcare Quarterly (Toronto, Ontario)
Humans
Jordan I
Killackey T
Kim L
Kirby-Allen M
Lalloo C
Lalonde C
Lambert S
Marianayagam J
Noel M
Oberlander T
Pandemics
Siden H
Stinson J
Swidrovich J
Tunji-Ajayi L