The Family Liaison : an integral part of our research team (Poster)
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.
Hermansen AM; Kim L; Siden H
2021
<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>
<a href="http://hdl.handle.net/2429/78621">10.14288/1.0398351</a>
Exploring what motivates parents of children living with medical complexity to participate in research studies: An Interpretive Phenomenology study (Poster)
Kim L; Siden H; Cook K; Hermansen AM
2022
<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>
What are the motivators and barriers to research participation? (Poster)
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.
Kim L; Siden S; Cook K; Hermansen AM
2021
<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>
<a href="https://dx.doi.org/10.14288/1.0398352">10.14288/1.0398352</a>
Optimising the process for conducting scoping reviews
Evidence-Based Medicine; Humans; information science; Publications; Research Design; Q3 Scoping Review
Knowledge synthesis constitutes a key part of evidence-based medicine and a scoping review is a type of knowledge synthesis that maps the breadth of literature on a topic. Conducting a scoping review is resource intensive and, as a result, it can be challenging to maintain best practices throughout the process. Much of the current guidance describes a scoping review framework or broad ways to conduct a scoping review. However, little detailed guidance exists on how to complete each stage to optimise the process. We present five recommendations based on our experience when conducting a particularly challenging scoping review: (1) engage the expertise of a librarian throughout the process, (2) conduct a truly systematic search, (3) facilitate communication and collaboration, (4) explore new tools or repurpose old ones, and (5) test every stage of the process. These recommendations add to the literature by providing specific and detailed advice on each stage of a scoping review. Our intent is for these recommendations to aid other teams that are undertaking knowledge synthesis projects.
Pawliuk C; Brown HL; Widger K; Dewan T; Hermansen AM; Grégoire MC; Steele R; Siden H
BMJ Evidence-Based Medicine
2021
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).
<a href="http://doi.org/10.1136/bmjebm-2020-111452" target="_blank" rel="noreferrer noopener">10.1136/bmjebm-2020-111452</a>
Contributions and recognition of patient partners in pediatric health research: a rapid scoping review protocol
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.
Pawliuk C; Hermansen AM; Barrans C; Siden H
OSF Preprints
2023
<a href="https://doi.org/10.31219/osf.io/svztf">10.31219/osf.io/svztf</a>
Using Web Analytics and Social Media to Improve Knowledge Translation and Increase Patient Engagement
For the last several months our team of clinicians and health librarians have been collecting analytics data via Google Analytics, Twitter analytics, and MailChimp analytics to inform the following projects as part of an outreach strategy: <br /><ul><li>The re-design and revision of an existing website showcasing a pan-Canadian collaboration (PedPalASCNET) between experts in pediatric palliative care. We have also begun drafting and designing a second website centered around a study titled “Optimizing the Management of Pain and Irritability in Children with Severe Neurological Impairments.”</li>
<li>The re-evaluation of our social media presence, based on user engagement with our monthly citation list email campaigns, titled “Trends in Pediatric Palliative Care Research”</li>
<li>A digital library to showcase and make available the latest research in the area of pediatric palliative care, containing the metadata to over 500 carefully selected publications</li>
</ul>
Our primary goal has been to communicate and translate the knowledge from our projects in a way which caregivers, clinicians, and researchers can readily understand. A second goal has been to promote and disseminate the knowledge from other researchers’ projects. These goals have been enhanced by our ability to promote research via our social media presence and monthly mailing list, and by having a digital library to make pediatric palliative research more accessible and discoverable.<br />(presented November 2017)
Robins S; Siden H; Pawliuk C; Hermansen AM
PedPalASCNet
2017
Article information provided for research and reference use. It is licensed under the Creative Commons License: <a href="https://creativecommons.org/licenses/by-nc-nd/4.0/" target="_blank" rel="noreferrer">Attribution-NonCommercial-NoDerivatives 4.0 International (CC BY-NC-ND 4.0)</a>
The PIUO Study: Optimizing the Management of Pain and Irritability of Unknown Origin in Children with Severe Neurological Impairment (Poster)
Siden H; Hermansen AM
2022
<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>
P259 A Scoping Review to Examine Symptoms in Children with Rare, Progressive, Life-Threatening Disorders
2016-12
Siden H; Widger K; Gregoire MC; Dewan T; Harvey B; Hermansen AM; Pawliuk C; Brown H; Beck C; Steele R
Journal Of Pain And Symptom Management
2016
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).
Journal Article
<a href="http://doi.org/10.1016/j.jpainsymman.2016.10.298" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2016.10.298</a>