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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
9022ebc75a87a2f978c7cdde53235c70
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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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
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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
-
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 Publications
Subject
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A collection of relevant articles published by one or more of PedPalASCNet's members
Text
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Citation List Month
n/a
URL Address
<a href="http://nsuworks.nova.edu/tqr/vol19/iss39/1/" target="_blank" rel="noreferrer">http://nsuworks.nova.edu/tqr/vol19/iss39/1/</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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Innovations in Research with Medically Fragile Populations: Using Bulletin Board Focus Groups
Publisher
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The Qualitative Report
Date
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2014
Subject
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Bulletin Board Focus Group; Case Studies; Complexity; Disability/Disabled Persons; End-Of-Life Issues; Focus Groups; Illness and Disease; Young Adults
Creator
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Cook K; Jack S; Siden H; Thabane L; Browne G
Description
An account of the resource
A new group of medically fragile young adults are graduating from pediatric palliative care programs with limited expectations to live beyond early adulthood, and no comparable adult services to support their complex needs. Accessing this population is difficult because of the complexity of their conditions, the extensive personal and equipment supports that limit feasibility for travel, and divergent communication abilities. Therefore, we undertook a descriptive case study using an asynchronous modification of an online focus group, a bulletin board focus group (BBFG). The greatest strengths of the BBFG are the appeal of this methodology for young adults and the multi day focus group becomes both a community and an intervention. An important limitation of this method was participant follow through on discussion threads. This BBFG provided rich and varied types of data, and very positive participant experiences. Keywords: Bulletin Board Focus Group, Case Studies, Complexity, Disability/Disabled Persons, End-Of-Life Issues, Focus Groups, Illness and Disease, Young Adults
Identifier
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<a href="http://nsuworks.nova.edu/tqr/vol19/iss39/1/" target="_blank" rel="noreferrer">tqr/vol19/iss39/1</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).
2014
Browne G
Bulletin Board Focus Group
Case Studies
Complexity
Cook K
Disability/Disabled Persons
End-Of-Life Issues
Focus Groups
Illness and Disease
Jack S
Siden H
Thabane L
The Qualitative Report
Young Adults