Commentary By:
Candice Barrans – Parent Partner – BC Children’s Hospital Research Institute, British Columbia, Canada – Candice is an embedded parent partner on the Siden Research Team. She organizes the monthly publication of the Trends in Pediatric Palliative Care Research (TPPCR) newsletter along with tabulating the associated citation list and commentary from a community expert. She also supports and mediates the quarterly Parent Journal Club. Candice is currently engaged in a scoping review investigating Parent/Patient Acknowledgement in Research.
Colleen Pawliuk – Research Librarian – BC Children’s Hospital Research Institute, British Columbia, Canada – Colleen has been an embedded Librarian at PedPalASCNet since 2016. She holds a Master’s degree in Library and Information Studies from the University of British Columbia and has recently published on the impact of librarians on the quality of systematic reviews.
Feature Article
Trends in Pediatric Palliative Care Research – Visual and Analysis of Trends in 2023
Commentary
This year by request of our readers we have returned to our annual review publication which looks back at the pediatric palliative care (PPC) research published in 2023 on our citation list. When we published our first annual review in 2017, we wanted to do our best to emphasize the trends we were seeing in PPC research. We have heard from our readers that they find this yearly review helpful for publishing their own research and for contextualizing and promoting their work in the field.
Since the first annual review in 2017, we have highlighted which journals are leaders in publishing PPC research and which journals may be an ideal home for our readers’ research work. While some journals remain on this list throughout the years, we have also seen significant changes. For example, we were pleased to see that the journal Children wasn’t on our top publication list in 2017 and is now the top journal with 21 publications of PPC articles. It would be curious to know if this reflects a broader trend toward publishing PPC research in Open Access journals, with the new appearance of other Gold Open Access journals such as Frontiers in Pediatrics.
Another requested part of our review is to reveal the top authors in the field for the year. This year we also provide links for each author so that the reader is able to view their works in our PPC library. Additionally, we add a visualization of the networks of co-authors and their organizations or institutions to offer opportunities to build new bridges or leverage current relationships. A new visualization of the top funders for PPC research aims to highlight potential opportunities for funding.
In the past we have also tried to show emerging themes in our list by collecting the top Medical Subject Headings (MeSH) assigned to each of our articles. This year we present the subject headings for each article as a network map to both show more terms and to show the relationships between the themes. However, subject headings have their weaknesses: they are often very broad, and because they are regulated by large databases, they are slower to change to reflect emerging themes or updated terminology. This lowers agility of these terms to convey the most current themes in the pediatric palliative care community. The alternative would have been to use author keywords, which in comparison describe more nuanced themes of the literature. Unfortunately, in our current capacity of high-level annual review author keywords often yield too many unique terms to effectively tally without intensive data cleaning or manual tagging.
For example, a trend in the research community and our own research team has been patient and parent involvement, and more recently, how to move public impact in research from consultation towards activities of empowerment. In the controlled vocabulary of indexed terms this trend is wrapped up in terms such as patient participation, participatory research, community-based participatory research, community participation, patient-oriented research, patient engagement, stakeholder engagement, stakeholder participation. These terms are broad; they may include parent and patient involvement in research, but even if they do, there is no way to understand through these terms where on the public impact spectrum these parents or patients’ contributions lay. One method that has begun to have traction which circumvents the controlled vocabulary of index terms has been to cite patients or parent partners as authors in the research. We are looking forward to seeing the evolution of this theme and the way in which such papers are identified in the upcoming years.
Finally, we would like to thank you, our global readership of clinicians, researchers, nurses, social workers, parents, and support staff, for your time and interest in and contribution to our newsletter and your tireless investment to developing the practice of pediatric palliative care in your communities. We hope this newsletter continues to inform, support, and inspire your journey.
– The team at Trends in Pediatric Palliative Care Research Newsletter
View the Visuals and Analysis of Trends in 2023